Information for Families

The Catalyst Center works primarily at the system and policy levels, which means we collaborate with researchers, agencies, government and other national and state partners to promote strategies for improving the health care system.

Many organizations provide direct services and assistance to Children and Youth with Special Health Care Needs and their families. This directory, which is organized by state, provides links to a wide range of direct service organizations, and to important information related to Title V Maternal and Child Health programs. Title V programs work to improve the health and well-being of women and children, including children with special health care needs.

Haga clic en “espanol” en la parte superior derecha de la pantallapara encontrar algunos recursos para familias, en español. También en esta sección, algunos sitios web en inglés pueden ofrecer recursos en español. Intente buscar traducciones en español en la sección de recursos de los sitios web (llamado Resources en inglés).

Select a state to view state resources:

Alabama

Family Voices of Alabama

Through the national Family Voices network, Family Voices of Alabama provides families with tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care. It is the federally-funded Family-to-Family Health Information Center in Alabama.

Parent Connection Network of Alabama

The Parent Connection Network of Alabama is a statewide network of families willing to share experiences. The organization believes that when parents are informed, connected, and supported by other families who have been there too, they are better able to meet any challenges that may arise.

Alabama Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Alabama Disabilities Advocacy Program (ADAP)

The Alabama Disabilities Advocacy Program (ADAP) is part of the nationwide federally mandated protection and advocacy (P&A) system. ADAP’s mission is to provide quality, legally based advocacy services to Alabamians with disabilities in order to protect, promote and expand their rights. ADAP’s vision is one of a society where persons with disabilities are valued and exercise self-determination through meaningful choices and have equality of opportunity.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

See also General resources

Alaska

Stone Soup Group

Stone Soup Group is a federally-funded Family-to-Family Health Information Center. It offers resources to help families with the cost of meeting their child’s special needs in Alaska.  It is also the Alaska Family Voices State Affiliate Organization.

Alaska Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Law Center of Alaska

The mission of the Disability Law Center of Alaska is to provide protection and advocacy services to Alaskans who experience disabilities, through legal representation, education, and strategic advocacy.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

See also General resources

Arizona

Raising Special Kids

En Español (Arizona)

Raising Special Kids is the Arizona Family Voices State Affiliate Organization, federally-funded Family-to-Family Health Information Center, and Parent-to-Parent (P2P) center. Raising Special Kids is a comprehensive parent center serving families of children with disabilities and special health care needs in Arizona. As a parent-led nonprofit organization, they provide information, training, and support to assist families in meeting a range of challenges linked to raising a child with special needs. Their workshops offer training in many topics including advocacy, effective communication, positive parenting, supportive relationships, and special education. News and information of interest to families experiencing disability is shared through a quarterly newsletter, weekly electronic notices, and social media communities. All programs and services are provided to families free of charge.

Arizona Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Arizona Center for Disability Law

The Arizona Center for Disability Law advocates for the legal rights of persons with disabilities to be free from abuse, neglect, and discrimination and to gain access to services, maximizing independence and achieving equality.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Pilot Parents of Southern Arizona

Pilot Parents of Southern Arizona provides a wide variety of programs and services that support families of children with disabilities, such as peer-to-peer support, parent training and information, books and videos addressing disabilities and related topics available for parent and professionals, and a quarterly newsletter.

See also General resources

Arkansas

Arkansas Disability Coalition

Arkansas Disability Coalition works for equal rights and opportunity for Arkansans with disabilities through public policy change, cross-disability collaboration, and the empowerment of people with disabilities and their families.  It is the federally-funded Family-to-Family Health Information Center in Arkansas.

Arkansas Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Rights Center of Arkansas

The Disability Rights Center of Arkansas is a private non-profit agency with offices in Little Rock, Arkansas. Since 1977 the Governor of Arkansas has designated DRC the independent rights protection and advocacy system for persons with disabilities in Arkansas. It carries out activities under several federal programs to provide a range of services to advocate for and protect the rights of persons with disabilities throughout the state.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Partners for Inclusive Communities

Partners for Inclusive Communities conducts research and provides education, training, technical assistance, information, and services to people with disabilities, their families, students, and professionals involved with disability related programs.

The Arkansas Division of Developmental Disabilities Services (DDS) 

The Arkansas Division of Developmental Disabilities Services (DDS), in the state’s Department of Human Services Children’s Services, provides care coordination and/or specialized medical care and rehabilitation for children with special health care needs whose families are partially or wholly unable to provide for such services and who meet the agency’s criteria.

See also General resources

California

Family Voices of California (FVCA)

Family Voices of California is a statewide collaborative of locally-based parent-run centers working to ensure quality health care for children and youth with special health care needs. FVCA is a State Affiliate Organization of Family Voices and a federally-funded Family-to-Family Health Information Center.

Parents Helping Parents

Parents Helping Parents provides an array of services to parents of CSHCN that includes: Parent-to-Parent Support, Peer Counseling, Support and Information Groups, Integrated Playgroups, Information, and Referral & Guidance. It is the Parent-to-Parent (P2P) program in California.

California Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Rights California

En Español (California)

Disability Rights California’s mission is to advance the rights of Californians with disabilities.  The organization believes people with disabilities have the right to family, social, and intimate relationships.  They are financially secure, can make life choices, and have opportunities for satisfying work, recreation, spiritual lives, and community service.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

The California Endowment

The California Endowment is a private, statewide health foundation that was created in 1996 as a result of Blue Cross of California’s creation of WellPoint Health Networks, a for-profit corporation. This conversion set the groundwork for their mission: to expand access to affordable, quality health care for underserved individuals and communities, and to promote fundamental improvements in the health status of all Californians.

California Health Care Foundation (CHCF)

CHCF is an independent philanthropy committed to improving the way health care is delivered and financed in California and helping consumers make informed health care and coverage decisions.

United Advocates for Children of California (UACF)

United Advocates for Children and Families (UACF) serves to improve the quality of life for all children and youth with mental, emotional, and behavioral challenges and to eliminate institutional discrimination and social stigma. UACF provides training, technical assistance, parent-to-parent support and public policy advocacy. It is the Statewide Family Network (SFN) in California.

See also General resources

Colorado

Family Voices of Colorado

Family Voices of Colorado provides information referral, advocacy support information, private health insurance advocacy, training, and policy work to ensure that children’s health is addressed amidst change in public and private health care systems. It is the federally-funded Family-to-Family Health Information Center in Colorado.

Parent to Parent of Colorado (P2P-CO)

En Español (Colorado)

P2P-CO is a parent-initiated, parent-controlled, organized group that builds inclusive communities, takes effective and constructive group action, and supports each other on the journey of parenting their sons and daughters with special health care needs or disabilities. It is the Parent-to-Parent (P2P) program in Colorado.

Colorado Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Law Colorado

En Español (Colorado)

Disability Law Colorado (formerly known as The Legal Center for People with Disabilities and Older People) is an independent, public interest non-profit organization, specializing in civil rights and discrimination issues. They work to promote systemic change to sustain or improve the quality of life for children and adults with disabilities and elders.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

JFK Partners

JFK Partners promotes the independence, inclusion, contribution, health, and well-being of people with developmental disabilities and special health care needs and their families through consumer, community, and university partnerships.

PEAK Parent Center

En Español (Colorado)

PEAK Parent Center is Colorado’s Parent Training and Information Center. PEAK is a statewide organization of parents of children with disabilities reaching out to assist other parents and professionals.

Federation of Families for Children’s Mental Health – Colorado Chapter

The mission of the Colorado Federation is to be an advocate for children, youth, and families impacted by mental health issues while striving to improve and strengthen related systems, programs and policies across the state of Colorado. It is the Statewide Family Network (SFN) in Colorado.

See also General resources

Connecticut

Parents Available to Help (PATH)

PATH is a network of families providing informational and emotional support to others who have a child with developmental or health related needs. It is the federally-funded Family-to-Family Health Information Center, and Parent-to-Parent (P2P) program in Connecticut.

Connecticut Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

The Office of Protection and Advocacy for Persons with Disabilities

P&A is an independent State agency created to safeguard and advance the civil and human rights of people with disabilities in Connecticut.  Part of a nationwide network of protection and advocacy systems, the Office operates under both State and federal legislative mandates to provide information, referral, and advocacy services, pursue legal and administrative remedies on behalf of people with disabilities who experience disability-related discrimination, investigate allegations of abuse and neglect that arise in specific service settings or that affect individuals with particular disabilities, and provide education, information and training on disability rights to policy makers, advocacy groups and members of the public.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Connecticut Parent Advocacy Center (CPAC)

En Español (Connecticut)

CPAC is a statewide nonprofit organization that offers information and support to families of children with any disability or chronic illness, age birth through 26.

NAMI Connecticut 

The mission of NAMI Connecticut is to improve the quality of life for all those impacted by mental illness, through support, education, and advocacy. In addition to their support groups and affiliated chapters, NAMI Connecticut offers a toll-free Helpline (800) 215-3021 for people living with mental illness, families, and professionals; educational programs geared toward those with mental illness – including children – and their families; a bi-monthly member e-newsletter, and a robust public policy program with legislative advocacy training and support. It is the Statewide Family Network (SFN) in Connecticut.

2-1-1 Child Development Infoline 

2-1-1 Child Development Infoline (CDI) works individually with families to connect them to the most appropriate services available and follows up to ensure their needs are being met. CDI Care Coordinators are available by phone to help with disability and health related issues and more. CDI may also serve as an access point for many of Connecticut’s programs and services for children and their families. 

The Connecticut Family Support Network

The Connecticut Family Support Network is committed to helping families of individuals with disabilities and special health care needs and the professionals who work with them, find information, resources, and supports to improve their lives. They connect one-to-one, hold trainings and workshops, share information, and offer support groups.

Medical Home Initiative (MHI)

The Connecticut Medical Home Initiative (MHI) has three parts: Care Coordination, Respite, and Extended Service Funding. Children & youth ages 0-21 who have or are at risk for a chronic physical, developmental, behavioral or emotional condition and who also require health and related services of a type or amount beyond that required by children or youth generally, may be eligible for the program.

See also General resources

Delaware

Family Voices of Delaware

Family Voices of Delaware assists families of CYSHCN and the professionals who serve them through direct information and referral, parent matching, support groups, conferences, topical calls, resource guides, listserves, newsletters, and surveys. It is the Family Voices State Affiliate Organization, the federally-funded Family-to-Family Health Information Center, the Parent-to-Parent (P2P) program, and the Statewide Family Network (SFN) in Delaware.

Delaware Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Community Legal Aid Society, Inc

A nonprofit law firm dedicated to equal justice for all, improving lives since 1946. It provides civil legal services at no cost to help people become safe and meet their basic needs for food, income and housing. It helps people with special needs, such as low income and/or disabilities, or who are age 60 and over. It also offers immigration law and other services to protect victims of crime, abuse and neglect.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Parent Information Center of Delaware

En Español (Delaware)

Parent Information Center of Delaware is a statewide nonprofit organization dedicated to providing information, support, and learning opportunities to students and to families who have children with disabilities or special needs. It strives to promote partnerships between families, educators, policy makers, and the community.

DelAWARE DisABILITIES HUB

DelAWARE DisABILITIES HUB, provides resources for youth and young adults with special needs and disabilities during the transition years to help them reach their full potential. It’s also designed to assist teachers, social workers, transition coordinators, case workers, parents, families, caregivers, and professionals.  

The Family SHADE

Delaware’s Family SHADE is a collaborative alliance of family partners and organizations committed to improving the quality of life for children and youth with special health care needs by connecting families and providers to information, resources, and service.

The Delaware Assistive Technology Initiative

The Delaware Assistive Technology Initiative (DATI) connects Delawareans who have disabilities with the tools they need in order to learn, work, play, and participate in community life safely and independently. DATI offers training and no-cost equipment loans. They also provide funding information and publish resource materials. 

See also General resources

D.C.

Advocates for Justice and Education

The mission of Advocates for Justice and Education (AJE) is to educate parents, youth, and the community about the laws governing public education, specifically for children with special needs. It seeks to empower youth and parents to be effective advocates on behalf of their children to ensure that they receive an appropriate education. It is the federally-funded Family-to-Family Health Information Center and Parent-to-Parent (P2P) program in D.C.

D.C. Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

University Legal Services for the District of Columbia

University Legal Services is a private, non-profit organization that serves as the District of Columbia’s federally mandated protection and advocacy system for the human, legal and service rights of people with disabilities. Services provided by ULS under the protection and advocacy grants include information and referral; education and training; investigation of reported or suspected instances of abuse or neglect; legal counsel; technical assistance, and litigation services; and technical assistance regarding legislative and policy concerns. All services are offered free of charge to eligible individuals in accordance with ULS’ available resources and policies.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Health Services for Children with Special Health Care Needs

HSCSN/NET is an innovative care management network coordinating health, social, and education services for the pediatric Supplemental Security Income and SSI-eligible populations of Washington, DC.

Total Family Care Coalition

Total Family Care Coalition (TFCC) focuses on keeping families first! Their mission is to “keep families together for a better community” by teaching families and youths how to advocate in finding community services and resources for sustaining a better quality of life. TFCC’s vision as the leading provider of family advocacy and support for the District of Columbia is to help families that have emotional, behavioral, and mental health difficulties. It is the Statewide Family Network (SFN) in the District of Columbia.

DC Partners in Transition

DC Partners in Transition is a group of DC stakeholders who are committed to improving the ability of DC youth with special needs and disabilities to successfully transition into education, employment, and independence. 

See also General resources

Florida

Family Network on Disabilities

Family Network on Disabilities of Florida, Inc. is a statewide network of families and individuals who may be at-risk, have disabilities, or have special needs. Its mission is to ensure through collaboration that Floridians have full access to family-driven support, education, information, resources, and advocacy. It is the federally-funded Family-to-Family Health Information Center in Florida.

Florida Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Rights Florida

En Español (Florida)

Disability Rights Florida is the designated protection and advocacy system for individuals with disabilities in the State of Florida. Disability Rights Florida has authority and responsibility under eight federal grants. Established in 1987, Disability Rights Florida is a statewide, not-for-profit corporation.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

The Florida Developmental Disabilities Council

The Florida Developmental Disabilities Council was established in 1971 to help plan individual and family-centered supports for persons with disabilities in Florida. The Council also guides the development and administration of services for people with developmental disabilities by planning and funding research, innovations, and programs designed to improve the quality of their lives.

See also General resources

Georgia

Parent to Parent of Georgia

En Español (Georgia)

Parent to Parent of Georgia provides support and information to parents of children with disabilities. It is also the federally-funded Family-to-Family Health Information Center and the Parent-to-Parent (P2P) program in Georgia.

Georgia Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Georgia Advocacy Office

Georgia Advocacy Office’s mission is to organize its resources and follow its values and legal mandates in ways which substantially increase the number of people who are voluntarily standing beside and for people in Georgia who have significant disabilities and mental illness.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

FOCUS + Fragile Kids

FOCUS + Fragile Kids helps children who are medically fragile or have significant developmental and/or physical disabilities. They offer information and education, provide fun activities for parents and kids, and help to make equipment available to children in need.

Parents Educating Parents & Professionals, Inc.

Parents Educating Parents & Professionals, Inc is dedicated to improving the quality of life for all families of children, youth, and adults with disabilities.

Georgia Parent Support Network, Inc.

Georgia Parent Support Network is dedicated to providing support, education, and advocacy for children and their families with mental illness, emotional disturbances, and behavioral differences. It is the Statewide Family Network (SFN) in Georgia.

Georgia Council on Developmental Disabilities

Georgia Council on Developmental Disabilities’ (GCDD) mission is to promote public policy that creates an integrated community life for persons with developmental disabilities, their families, friends, neighbors and all who support them. They work to achieve this mission by sharing information, coordinating public outreach and implementing strategic legislative advocacy.

See also General resources

Hawaii

Hilopa’a Family to Family Health Information Center

Hilopa’a is a Family to Family Health Information Center providing information and referral, consultation, and training to families of children and youth with special health care needs and their professional partners across the country.

Hawaii Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Hawaii Disability Rights Center

The mission of the Disability Rights Center is to protect and promote the human, civil and legal rights of individuals with disabilities through the provision of information and advocacy.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

See also General resources

Idaho

Idaho Parents Unlimited Inc. (IPUL)

IPUL is a statewide organization founded to provide support, information, and technical assistance to parents of children and youth with disabilities. It is the Family Voices State Affiliate Organization and federally-funded Family-to-Family Health Information Center in Idaho.

Families Together

Families Together provides families with resources and support that build and maintain strong, healthy, informed, and actively involved family members who can work together to improve the life long outcomes for their child or their sibling with a disability. 

Idaho Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Rights Idaho

DisAbility Rights Idaho assists people with disabilities to protect, promote and advance their legal and human rights, through quality legal, individual, and system advocacy.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Idaho Federation of Families for Children’s Mental Health, Inc.

Idaho Federation of Families for Children’s Mental Health is a family-run nonprofit organization that actively promotes and seeks solutions for mental health well being for children and youth. They work with government, nonprofit, and for-profit organizations for the needs of children with emotional, behavioral, and mental disorders and their families. They are a chapter of the National Federation of Families for Children’s Mental Health. It is the Statewide Family Network (SFN) in Idaho.

See also General resources

Illinois

The ARC of Illinois

The ARC of Illinois is home to Family Voices of Illinois and the state’s federally funded Family-to-Family Health Information Center. These organizations work together to ensure families raising children and youth with special health care needs are supported, connected to needed services and supports, and partner with policymakers to ensure services are family-centered.

Illinois Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Equip for Equality

The mission of Equip for Equality is to advance the human and civil rights of children and adults with physical and mental disabilities in Illinois. It is the only statewide, cross-disability, comprehensive advocacy organization providing self-advocacy assistance, legal services, and disability rights education while also engaging in public policy and legislative advocacy and conducting abuse investigations and other oversight activities.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Family Matters Parent Training & Information Center

Family Matters Parent Training & Information Center offers access to knowledge about early intervention services for children from birth to three years of age, has information about special education services for school aged children, helps with transition issues for students who will be leaving the educational system and are preparing for the world of work or adult services, and provides information about resources, best practices, specific disabilities, parent-to-parent connections, and training opportunities and conferences.

Family Resource Center on Disabilities (FRCD)

FRCD is a coalition of Illinois parents and professional organizations working to improve services for all children with disabilities.

See also General resources

Indiana

Family Voices of Indiana

Family Voices Indiana is a statewide, family-led organization that provides information, education, training, outreach, and peer support to families of children and youth with special health care needs and the professionals who serve them. As the Family-to-Family Health Information Center, they are staffed by experienced family leaders who have children with special health care needs, and expertise in navigating federal, state and local public and private health care systems.

About Special Kids, Inc.

En Español (Indiana)

A.S.K. is place for families and professionals in Indiana to go to “ASK” questions about children with special needs and to access information and resources about a variety of topics, such as health insurance, special education, community resources, and medical homes. It is the Parent-to-Parent (P2P) program in Indiana.

Indiana Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Indiana Protection and Advocacy Services

IPAS was created in 1977 by state law (IC. 12-28-1-6 as amended) to protect and advocate the rights of people with disabilities and is Indiana’s federally designated Protection and Advocacy (P&A) system and client assistance program. It is an independent state agency, which receives no state funding and is independent from all service providers, as required by federal and state law.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Indiana Resource Center for Families with Special Needs

En Español (Indiana)

Indiana Resource Center for Families with Special Needs provides parents, families, and service providers in Indiana with the information and training necessary to help assure effective educational programs and appropriate services for children and young adults with disabilities.

Indiana Federation of Families for Children’s Mental Health

The Indiana Federation of Families for Children’s Mental Health (IFFCMH) is the only statewide not-for-profit organization dedicated exclusively to the field of children’s mental health. The mission of IFFCMH is to create and grow networks of support, education, intervention, leadership, and advocacy, thereby empowering families to facilitate growth and development for their children who have emotional, behavioral or mental challenges while also creating and maintaining a positive environment for all family members. It is the Statewide Family Network (SFN) in Indiana.

See also General resources

Iowa

ASK Family Resource Center

The ASK Family Resource Center is an exciting new concept; a “one-stop-shop” for children and adults with disabilities and their families. ASK is the federally-funded Family-to-Family Health Information Center, and Parent-to-Parent (P2P) program in Iowa.

University of Iowa-Child Health Speciality Clinics (CHSC)

The Child Health Specialty Clinics (CHSC) mission is to improve the health, development, and well-being of children and youth with special health care needs in partnership with families, service providers, communities, and policymakers.

Iowa Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Rights Iowa

Disability Rights IOWA is a federally funded program that protects and advocates for the human and legal rights of individuals with disabilities and/or mental illness.  Disability Rights IOWA supports people with disabilities to secure their rights and full participation as citizens through a program of self-advocacy education, information and referral, non-legal advocacy, and legal and systems advocacy.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Iowa COMPASS

Iowa COMPASS is Iowa’s free, statewide information and referral service for people with disabilities, their families, service providers, and other members of the community

See also General resources

Kansas

Families Together, Inc.

Families Together, Inc. is a parent training and information center (PTI) serving families in Kansas with a son or daughter with a disability. It is the Family Voices State Affiliate Organization, the federally-funded Family-to-Family Health Information Center, and Parent-to-Parent (P2P) program in Kansas.

Kansas Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Rights Center of Kansas

The Disability Rights Center of Kansas (DRC), is a public interest legal advocacy agency empowered by federal law to advocate for the civil and legal rights of Kansans with disabilities. DRC is the Official Protection and Advocacy System for Kansas and is a part of the national network of federally mandated and funded protection and advocacy systems. As such, DRC advocates for the rights of Kansans with disabilities under state or federal laws (ADA, the Rehabilitation Act, Federal Medicaid Act, Kansas Act Against Discrimination, etc.)

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Special Health Care Needs

Special Health Care Needs (SHCN) is a state program that supports and provides health care services and case management for children who are at risk for or who have a developmental disability or chronic health condition. Children may qualify for services at the Center for Child Health and Development for the following conditions: Cleft Lip/Cleft Palate, Cardiology, Cystic Fibrosis, Seizure Disorders, Urology, Genetic and/or metabolic conditions such as PKU.

Oral Health Kansas

Oral Health Kansas established several programs designed to support children and youth needs for individualized and specialized oral health care. These include partnering with state and local agencies serving children and youth as well as schools, distributing public awareness and oral health educational materials, and providing education and training opportunities for all who support the healthy development of children and youth.

See also General resources

Kentucky

Kentucky Family to Family Health Information Center

En Español (Kentucky)

Kentucky Family to Family Health Information Center‘s mission is to enhance the quality of life for Kentucky’s children with special health care needs through direct service, leadership, education, and collaboration. It is the Parent-to-Parent (P2P) program in Kentucky.

Kentucky Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Kentucky Protection and Advocacy

Protection and Advocacy (P&A) is an independent state agency that was designated by the Governor as the protection and advocacy agency for Kentucky. P&A’s staff includes professional advocates and attorneys. They are advocates working together with people who have disabilities to promote and protect their legal rights. Through their information and referral services, they try to answer questions about the rights of the citizens of Kentucky under disability laws.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Kentucky Special Parent Involvement Network (KY-SPIN, Inc.)

KY-SPIN aims to empower and support individuals with disabilities and their families to effectively advocate for and access needed information, resources, and support networks in order to enhance the quality of their lives.

See also General resources

Louisiana

Bayou Land Families Helping Families

Bayou Land Families Helping Families provides information and referral, education and training, and peer-to-peer support to individuals with disabilities or special needs and their families. It is the Family Voices State Affiliate Organization and the federally-funded Family-to-Family Health Information Center for Louisiana.

Louisiana Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Advocacy Center

The Advocacy Center is Louisiana’s protection and advocacy system. Among the diverse services offered are legal representation, information, and referral, outreach, and training.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Families Helping Families of Louisiana Centers

Families Helping Families of Louisiana is a group of families who are committed to reaching out to other families who have members with special needs.

See also General resources

Maine

Maine Parent Federation, Inc.

The Maine Parent Federation, Inc. is a statewide organization that provides information, advocacy, education, and training to benefit all children. It promotes individual aspirations and community inclusion for people with disabilities. It is the federally-funded Family-to-Family Health Information Center, the Parent-to-Parent (P2P) program, and the Statewide Family Network (SFN) in Maine.

Maine Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Rights Center

The Disability Rights Center (DRC) is Maine’s protection and advocacy agency for people with disabilities. It is a non-profit agency independent of state and federal government.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Maine CITE

Maine CITE is a statewide project designed to help make assistive and universally designed technology more available to Maine children and adults who have disabilities.

See also General resources

Maryland

Parents’ Place of Maryland

En Español (Maryland)

Parents’ Place of Maryland provides education, information, technical assistance, and supportive activities for the parents of children with disabilities throughout Maryland. It is the Family Voices State Affiliate Organization and the federally-funded Family-to-Family Health Information Center in Maryland.

Seeking Equality, Empowerment, and Community (SEEC)

SEEC is an innovative nonprofit agency providing individualized, community-based supports to people with developmental disabilities to help them realize their version of The American Dream: a safe and happy home, good health, gratifying employment, enriching leisure activities, educational opportunities, and positive social relationships. It is the Parent-to-Parent (P2P) program in Maryland.

Maryland Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Rights Maryland (DRM)

En Español (Maryland)

Disability Rights Maryland is the designated Protection and Advocacy agency for the State of Maryland, mandated to advance the civil rights of people with disabilities. It is a non-profit legal services organization. It uses an array of strategies, including information and referral, direct representation, abuse and neglect investigations, technical assistance, community outreach, and training.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Kennedy Krieger Institute

Kennedy Krieger Institute is an internationally recognized facility located in Baltimore, Maryland dedicated to improving the lives of children and adolescents with pediatric developmental disabilities through patient care, special education, research, and professional training.

Maryland Coalition of Families for Children’s Mental Health

The Maryland Coalition of Families is the statewide voice for children’s behavioral health and is dedicated to building a family-driven network of information and support and improving services in all systems of care for children, youth, and their families. It envisions all children, youth, and their families receiving quality behavioral health care that is responsive to their needs and cultures. It is the Statewide Family Network (SFN) in Maryland.

The Children with Special Health Care Needs Resource and Referral Services

The Children with Special Health Care Needs Resource and Referral Services is a project funded by the Maryland Department of Health and Mental Hygiene, Office for Genetics and Children with Special Health Care Needs. The goal of the project is to help children with special health care needs (CSHCNS) families and providers to find resources in Maryland’s communities and Children’s National Health System and to refer them to those services. The Children with Special Healthcare Needs Liaison can help families and providers find the following resources: respite care, child care, disease-specific information, education resources, financial assistance & funding, medical assistance, transportation, family support groups, equipment resources, social services.

See also General resources

Massachusetts

Massachusetts Family Voices at Federation for Children with Special Needs

The Federation is a center for parents and parent organizations to work together on behalf of children with special needs and their families. It is the Family Voices State Affiliate Organization and the federally-funded Family-to-Family Health Information Center in Massachusetts.

Family TIES of Massachusetts

Family TIES of Massachusetts is a statewide information and parent-to-parent support project for families of children with special needs and chronic illness. It is the Parent-to-Parent (P2P) program in Massachusetts.

Massachusetts Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Law Center, Inc.

En Español (Massachusetts)

The Disability Law Center (DLC) is the Protection and Advocacy agency for Massachusetts.  DLC is a private, non-profit organization responsible for providing protection and advocacy for the rights of Massachusetts residents with disabilities. DLC receives federal, state and private funding but is not part of the state or federal government.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Parent Professional Advocacy League

Parent Professional Advocacy League is the Massachusetts state chapter of the Federation of Families for Children’s Mental Health. It provides hope for children with mental health needs and their families through education, advocacy, outreach, and support. It is the Statewide Family Network (SFN) in Massachusetts.

Health Care for All – Massachusetts

HCFA seeks to create a consumer-centered health care system that provides comprehensive, affordable, accessible, culturally competent, high-quality care and consumer education for everyone, especially the most vulnerable. They work to achieve this as leaders in public policy, advocacy, education and service to consumers in Massachusetts.

Institute for Community Inclusion

The Institute for Community Inclusion at UMass Boston supports the rights of children and adults with disabilities to participate in all aspects of the community. Composed of practitioners, researchers, and teachers, it forms partnerships with individuals, families, and communities. It advocates for personal choice, self-determination, and social and economic justice.

See also General resources

Michigan

Michigan Family-to-Family Health Information Center

Michigan Family to Family Health Information Center (F2F HIC) is part of a federal initiative which funds F2Fs in every state, providing information and education on disability and health-related issues to families of children and youth with special health care needs (CYSHCN) and the professionals who serve them. They provide families with the tools to make informed decisions. They encourage and help build partnerships between professionals and families to improve quality of services for children and youth with special health care needs.

Parent to Parent of Southwest Michigan

Parent to Parent of Southwest Michigan is a non-profit community organization offering services at no cost to families who have children with disabilities or special needs. It is the community partner of Parent-to-Parent (P2P) USA.

Michigan Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Children’s Special Health Care Services Family Center

Children’s Special Health Care Services Family Center (CSHCSFC) helps persons with chronic health problems by providing: coverage and referral for specialty services, family centered services to support caretaking of your child, community-based services to help you care for your child at home and culturally competent coordinated services. Eligible participants must have a qualifying condition, be a Michigan resident, and be under the age of 21.

Michigan Protection and Advocacy Service, Inc.

The mission of MPAS is to advocate and protect the legal rights of people with disabilities.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Advocacy and Resource Center (ARC)

The ARC is committed to providing service, community education, and advocacy to ensure that persons with disabilities have the opportunity to develop their full potential and lead lives of dignity and purpose. The ARC is dedicated to improving the quality of life for persons with developmental disabilities.

HOPE Network

Hope Network is about helping people. Its mission is to “enhance the dignity and independence of persons who have a disability and/or are disadvantaged.”

Association for Children’s Mental Health (ACMH)

ACMH provides information, support, resources, referral, and advocacy for children and youth with mental, emotional, or behavioral disorders and their families. ACMH envisions all Michigan children and youth with emotional, behavioral, or mental health challenges and their families living in a safe, welcoming community with access to needed services and supports. It is the Statewide Family Network (SFN) in Michigan.

See also General resources

Minnesota

Family Voices of Minnesota

Family Voices of Minnesota is a non-profit, parent-run organization that serves families of children and youth with special health care needs and disabilities (CYSHCN). It is the Family Voices State Affiliate Organization and the Parent-to-Parent (P2P) program in Minnesota. Family Voices of Minnesota’s programs and services promote family and youth involvement and leadership in policy development and program design, implementation, and evaluation. They provide families support, information, seasoned wisdom, and tools to assist them in navigating the health system, making informed health care decisions for their child, building strong partnerships with professionals, and advocating for improved public and private policies related to services for CYSHCN and their families.

PACER Center

En Español (Minnesota)

PACER Center expands opportunities and enhances the quality of life for children and young adults with disabilities and their families. PACER is staffed primarily by parents of children with disabilities and works in coalition with 18 disability organizations. It is the federally-funded Family-to-Family Health Information Center in Minnesota.

Minnesota Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Minnesota Disability Law Center

As part of Legal Aid, the Minnesota Disability Law Center (MDLC) addresses the unique legal needs of Minnesotans with disabilities. MDLC provides free civil legal assistance to individuals with disabilities statewide on legal issues related to their disabilities.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Partners in Policymaking

The goal of Partners in Policymaking is to educate participants to be active partners with those who make policy. They will become partners in policymaking. The idea is to develop partnerships that are based on positive relationships. In today’s political climate of radical change, Partners graduates must work harder than ever to prevent the loss of basic rights for people with disabilities. Partners graduates can change the future by influencing public policy today.

Minnesota Association for Children’s Mental Health (MACMH)

En Español (Minnesota)

MACMH’s mission is to promote positive mental health for all infants, children, adolescents and their families. MACMH provides referrals and trainings that build understanding of the multiple systems that serve children and how parents can navigate them effectively and trains professionals by presenting current research as evidence-proven techniques that can be put directly into practice. It is the Statewide Family Network (SFN) in Minnesota.

See also General resources

Mississippi

University of Southern Mississippi – Family-to-Family Health Information Center

Mississippi’s Family-to-Family Health Information and Education Center is a family-focused, family-managed resource center that EMPOWERS families of children with special health care needs to be partners in decisions concerning the health of their children. It is the Family-to-Family Health Information Center in Mississippi.

Mississippi Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Rights Mississippi

Disability Rights Mississippi (DRMS) is a private, non-profit corporation with a federal mandate to protect and advocate for the rights of individuals with disabilities across the state of MS. DRMS has been providing advocacy services for almost thirty years, free of charge, to Mississippians with disabilities and has helped improve the lives of thousands of Mississippi’s most vulnerable population by championing their rights. DRMS is the only disability advocacy agency in MS that has attorneys on staff to pursue legal remedies if necessary. The mission of DRMS is to promote, protect and advocate for the legal and human rights of all persons with disabilities and to assist them with full inclusion in home, community, education, and employment.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

University of Southern Mississippi – Institute for Disability Studies

The Institute for Disability Studies (IDS) is Mississippi’s Center for Excellence in Developmental Disabilities Education, Research, and Service. Housed at The University of Southern Mississippi, IDS strives to meet its federal mission to enhance the quality of life across the life span for citizens with disabilities and their families, regardless of culture, ethnicity, or socioeconomic background.

Mississippi Families as Allies, Inc.

Families As Allies is an organization run by families of children with emotional and behavioral challenges for families of children with these challenges. It offers telephone listen, support and information sharing services, family partner services, family network meetings, family training and community organizing events, and public education and outreach. It is the Statewide Family Network (SFN) in Mississippi.

The Arc of Mississippi

The Arc of Mississippi was founded in 1961 and is an affiliate of The Arc of the United States, a grassroots advocacy organization for citizens of all ages with cognitive, intellectual, and developmental disabilities, and their families. The Arc of Mississippi works to include all children and adults with cognitive, intellectual, and developmental disabilities in every community. They focus on abilities, respect, a choice for all and encourage active citizenship and inclusion in every community.

See also General resources

Missouri

Missouri Family-to-Family Resource Center

En Español (Missouri)

The Missouri Family-to-Family Resource Center serves individuals with disabilities and/or special health care needs, their families, and professionals who support them. They provide practical information and tools to help families navigate their life course and connect families with others who share similar experiences. It is the federally-funded Family-to-Family Health Information Center in Missouri. It is also the Parent-to-Parent (P2P) program in Missouri.

Missouri Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Missouri Protection and Advocacy Services

MO P&A is a federally mandated system in the state of Missouri which provides protection of the rights of persons with disabilities through legally-based advocacy.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Missouri Parents Act (MPACT)

En Español (Missouri)

MPACT is a statewide parent training and information center serving all disabilities. Their mission is to ensure that all children with special needs receive an education that allows them to achieve their personal goals.

See also General resources

Montana

Parents, Let’s Unite for Kids

Parents, Let’s Unite for Kids provides information, support, training, and assistance to aid children at home, school, and as adults. It is the Family Voices State Affiliate Organization and the federally-funded Family-to-Family Health Information Center and Parent-to-Parent (P2P) program in Montana.

Montana Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Rights Montana

Disability Rights Montana is the federally-mandated civil rights protection and advocacy system for Montana. They have the legal authority to represent almost any person with a disability.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

The University of Montana Rural Institute

The Rural Institute Center for Excellence in Disability Education, Research, and Service is part of the national network of programs funded by the Federal Administration on Developmental Disabilities (ADD) committed to increasing and supporting the independence, productivity, and inclusion of persons with disabilities into the community.

See also General resources

Nebraska

Parent Training Information (PTI) Nebraska

PTI Nebraska is a statewide resource for families of children with disabilities and special health care needs. The mission of PTI Nebraska is to provide training, information, and support to parents in Nebraska who have a child, birth through twenty-six, with special needs. Resources are provided for parents, other family members, school personnel, and interested others. It is the Family Voices State Affiliate Organization and the federally-funded Family-to-Family Health Information Center in Nebraska.

The Arc of Omaha at the Ollie Webb Center

The Arc of Omaha’s mission is to enrich the lives of individuals with developmental disabilities and their families through support, programs, and advocacy. It is the Parent-to-Parent (P2P) program in Nebraska.

Nebraska Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Rights Nebraska

Disability Rights Nebraska was created to assist individuals with disabilities and their families in protecting and advocating for their rights. From its beginning, NAS has promoted the principles of equality, self-determination, and dignity of persons with disabilities.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Answers4Families

The Answers4Families project (Nebraska Network for Children and Families) provides information, dialogue, education, and support to Nebraskans with special needs by providing Internet resources.

Nebraska Federation of Families for Children’s Mental Health

Nebraska Federation of Families for Children’s Mental Health is a Family Run organization, Statewide collaboration around common issues and concerns affecting families and their organizations in each of the state’s six administrative regions, and a network of Family and Youth voices to help create the best system of care for children with mental, emotional and behavioral health challenges in Nebraska. It is the Statewide Family Network (SFN) in Nebraska.

The Family Care Enhancement Project

The Family Care Enhancement Project (FCEP) places Parent Resource Coordinators (PRCs) in medical clinics to provide information and support to families that have children with disabilities and special health care needs. FCEP is designed to: help families receive early intervention services, assist families who have children with special health care needs to access community resources, and identify other sources of funding to further support families. Grant funding is from the Nebraska Department of Education and Health & Human Services’ Early Intervention Program and supports families having children with disabilities or special health care needs from birth to the age of five.

See also General resources

Nevada

Family TIES of Nevada

Family TIES provides one place for families in Nevada touched by disability or special health care conditions to become empowered to create visions for independent lives. It is the Family Voices State Affiliate Organization, the federally-funded Family-to-Family Health Information Center, and the Parent-to-Parent (P2P) program in Nevada.

Nevada Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Nevada Disability Advocacy & Law Center

The Nevada Disability Advocacy & Law Center (NDALC) is a private, statewide non-profit organization that serves as Nevada’s federally-mandated protection and advocacy system for human, legal, and service rights for individuals with disabilities.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Parents Encouraging Parents (PEP)

PEP is Nevada’s statewide parent information and training center for families who have children with disabilities. It offers information and referral, a lending library, quarterly newsletter, conflict resolution support, training workshops, advocacy and mentor support, and individual assistance. It is the Statewide Family Network (SFN) in Nevada.

See also General resources

New Hampshire

New Hampshire Family Voices

New Hampshire Family Voices is a resource for information about your child’s special health care needs. It is the Family Voices State Affiliate Organization and the federally-funded Family-to-Family Health Information Center for New Hampshire.

NH Family Ties

New Hampshire Family Ties is a parent-to-parent support program that provides emotional support, insight, and understanding to parents when they learn their child has special needs, or when their child may be going through a transitional period. It is the Parent-to-Parent (P2P) program in New Hampshire. 

New Hampshire Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disabilities Rights Center

En Español (New Hampshire)

The Disabilities Rights Center (DRC) is New Hampshire’s designated Protection and Advocacy agency and authorized by federal statute “to pursue legal, administrative and other appropriate remedies” on behalf of individuals with disabilities. DRC is a statewide organization independent from state government or service providers.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Parent Information Center

The Parent Information Center (PIC) is a recognized leader in building strong family/school partnerships. PIC provides information, support, and educational programs for parents, family members, educators, and the community. PIC is a pioneer in promoting effective parent involvement in the special education process.

Granite State Federation of Families for Children’s Mental Health

The Granite State Federation of Families (GSFF) is a non-profit membership-driven organization that provides leadership in the field of children’s mental health. GSFF provides family and youth support and training. It is the Statewide Family Network (SFN) in New Hampshire.

Children’s Hospital at Dartmouth Hitchcock Family Center

The Children’s Hospital at Dartmouth Hitchcock (CHaD) Family Center can help families and professionals find information on parenting, illness, and disabilities. Families are welcome to stop by during their walk-in hours to ask the staff questions about: locating reliable health information; connecting with local support groups; finding local family services; applying for state health insurance in VT or NH; and learning more about hospital, internet, and community resources for families. 

See also General resources

New Jersey

Statewide Parent Advocacy Network, Inc. (SPAN)

SPAN, New Jersey’s “one stop” for families of children, birth to 21, strives to provide the best support and training to families and professionals who need assistance and keep people informed about important events in education, health care, and all the other areas of life that impact families of children with special health care needs and the professionals who work with them. It is the Family Voices State Affiliate Organization and the federally-funded Family-to-Family Health Information Center in New Jersey, and facilitates the Statewide Community of Care Consortium for Children and Youth with Special Healthcare Needs, bringing together over 100 state, county, local, and non-profit agencies working to improve services and outcomes for NJ’s CYSHCN.

New Jersey Statewide Parent to Parent

Parent-to-Parent, a collaboration with the Family Support Center of NJ, is a statewide network of parents supporting families of children with developmental delays, disabilities, and special health and mental health needs housed at the Statewide Parent Advocacy Network. It is the Parent-to-Parent (P2P) program in New Jersey.

New Jersey Alliance of Family Support Organizations (NJAFSO)

NJAFSO is the alliance of NJ’s network of county Family Support Organizations, family-led, community-based, non-profit agencies whose mission is to provide support, advocacy, and education to families and caregivers of children with emotional, behavioral and mental health needs.

New Jersey Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Early Intervention

The New Jersey Early Intervention System (NJEIS), under the Division of Family Health Services, implements New Jersey’s statewide system of services for infants and toddlers, birth to age three, with developmental delays or disabilities, and their families.

New Jersey Aging and Disability Resource Center (NJADRC)

NJADRC is a “doorway” to services for seniors and people with disabilities.

New Jersey Council on Developmental Disabilities

The NJ Council on Developmental Disabilities, funded by the federal government with matching funds from the state, engages in advocacy, capacity building, and systemic change that contribute to a coordinated, consumer and family-centered, consumer- and family-directed comprehensive system that includes needed community services, individualized supports, and other forms of assistance that promote self determination for individuals with developmental disabilities and their families.  It facilitates NJ’s Partners in Policymaking program and the Statewide and Regional Family Support Planning Councils.

New Jersey Division of Developmental Disabilities (DDS)

The Division serves as a single point of entry for people with disabilities that need information and/or services within the human services system. DDS administers programs that allow people with different types of disabilities to live more independently in the community, and in many cases, avoid the need to move into an institution. These programs include home and community-based service programs, as well as other resource programs. It also publishes (online and hard copy) New Jersey Resources 2011, a comprehensive guide to services across New Jersey for people with disabilities across systems.

Disability Rights New Jersey

Disability Rights New Jersey is a private, non-profit, consumer-directed organization established to advocate for and advance the human, civil and legal rights of citizens of New Jersey with disabilities, promote public awareness and recognition of individuals with disabilities as equally entitled members of society, advise and assist persons with disabilities, family members, attorneys and guardians in obtaining and protecting the rights of individuals with disabilities, and provide education, training and technical assistance to individuals with disabilities, the agencies that serve them, advocates, attorneys, professionals, courts and others regarding the rights of individuals with disabilities.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

The Elizabeth M. Boggs Center on Developmental Disabilities

The Boggs Center, NJ’s University Center of Excellence on Developmental Disabilities (UCEDD) provides community and student training and technical assistance, conducts research and model demonstrations, disseminates educational materials, and responds to requests for information.

Mainstreaming  Medical Care

Mainstreaming Medical Care, a project of the Arc of NJ, promotes quality health care for children and adults with developmental disabilities through advocacy on statewide committees assigned to make recommendations on health care for people with developmental disabilities, presentations on managed care and women’s health issues to large or small groups of families, staff and consumers; information and referral services to families, staff and consumers on how people with disabilities should access health care services from the current health care system; an annual medical care conference; and the Healthy Times newsletter for health care professionals and caregivers.

The Family Support Center of New Jersey

The Family Support Center is a “One-Stop-Shop” clearinghouse, offering you the most up-to-date information on all types of disabilities, as well as national, state, and local support programs and services for individuals and families seeking such information.

Mercer County Family Support Organization

Mercer County FSO brings compassion and cultural sensitivity to working with families.  They are dedicated to ensuring that all families are well-educated and effectively able to navigate systems of service that can be complicated and challenging. Mercer County FSO facilitates support with other parents, provides education and training, and offers referrals and information to caregivers with the goal of empowering families to utilize the system of care and resources effectively for their children and improving the quality of family life. It is the Statewide Family Network (SFN) in New Jersey.

Children’s Specialized Hospital Health Insurance Education

This resource, created by Children’s Specialized Hospital in NJ, helps families select a health plan that best meets the needs of their children with special health care needs. The site includes tips from other families, definitions of common health insurance terms, and other helpful resources.

See also General resources

New Mexico

Parents Reaching Out

En Español (New Mexico)

Parents Reaching Out is a statewide nonprofit organization that works with parents, caregivers, educators and other professionals to promote healthy, positive, and caring experiences for New Mexico families and children. It is the Family Voices State Affiliate Organization, the federally-funded Family-to-Family Health Information Center, and Parent-to-Parent (P2P) program in New Mexico.

New Mexico Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Rights New Mexico (DRNM)

Disability Rights New Mexico is a private, non-profit organization whose mission is to protect, promote and expand the rights of persons with disabilities. It is the designated protection and advocacy program for New Mexico, and as such it has authority under federal law to pursue legal, administrative and other remedies on behalf of persons with disabilities.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Abrazos Family Support Services – Southwest Communication Resources

Abrazos provides a variety of specialized health and developmental services that support families to meet the special needs of their infants, children, and adult family members. This includes: developmental assessment and evaluation; developmental intervention and service coordination; case management for Medicaid eligible pregnant women and babies; and respite care. They serve families living in the central New Mexico communities of Bernalillo and Sandoval Counties.

New Mexico Kids

New Mexico Kids is a portal for New Mexico families and early care and education personnel to find information for early childhood training and technical assistance, child care referrals and child development information. Thier special needs & disabilities resource library offers connections to many state and national resources.

See also General resources

New York

Parent to Parent of New York State

Parent to Parent of New York State is a statewide organization known for supporting families of individuals with special needs. It is the Family Voices State Affiliate Organization, the federally-funded Family-to-Family Health Information Center, and the Parent-to-Parent (P2P) program in New York.

New York Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

New York State Justice Center for the Protection of People with Special Needs

En Español (New York)

The New York State Justice Center assures that the state maintains the nation’s highest standards of health, safety, and dignity and supports service providers. Formerly: The Commision on Quality of Care and Advocacy for Persons with Disabilities. The Commission, which served New Yorkers with disabilities, was dissolved on June 30, 2013 and its responsibilities, programs, and function were transferred to the New York State Justice Center for the Protection of People with Special Needs.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

The Children’s Evaluation and Rehabilitation Center at the Rose F. Kennedy University Center For Excellence In Developmental Disabilities

The Children’s Evaluation and Rehabilitation Center (CERC) at the Albert Einstein College of Medicine provides a broad spectrum of clinical services for infants, children, adolescents, and, despite its name, adults, with problems that include physical, developmental, language, and learning disabilities.

includenyc

Provides families with children and young people from birth to 26 with any disability the knowledge, confidence, and skills they need to make informed decisions, effectively access and navigate systems and services, and the ability to advocate for themselves and other young people.

Sinergia

Sinergia provides service coordination, information, and support to families and individuals in need. Second, it provides families and individuals with the means of self-empowerment, ultimately enabling them to become their own advocates and directly assist other families.

Families Together in New York State

Families Together is a non-profit, family-run organization that strives to establish a unified voice for families of children and youth with social, emotional and behavioral challenges. Their mission is to ensure that every family has access to needed information, support, and services. It is the Statewide Family Network (SFN) in New York.

See also General resources

North Carolina

The Exceptional Children’s Assistance Center (ECAC)

ECAC has grown from an all volunteer parent organization to a full service Parent Training & Information Center serving families in North Carolina with more than twenty-five full and part-time staff and offices throughout NC. All services are provided at no charge to parents and families. It is the Family Voices State Affiliate Organization and the federally-funded Family-to-Family Health Information Center in North Carolina.

Family Support Network of North Carolina (FSN-NC)

FSN-NC promote and provide support for families with children who have special needs. It is the Parent-to-Parent (P2P) program in North Carolina.

North Carolina Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Rights North Carolina

En Español (North Carolina)

Disability Rights North Carolina is an independent, private not for profit organization. Designated by the Governor on July 1, 2007 to ensure the rights of all state citizens with disabilities through individual advocacy and system change, Disability Rights NC (formerly Carolina Legal Assistance) is part of a national system of federally mandated independent disability agencies. While it receives federal money, Disability Rights NC is completely independent of state government. It is also independent from the disability service system in order to be free of any conflicts of interests, which would undermine the capacity to advocate vigorously on behalf of the human and legal rights of people with disabilities.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

TelAbility

TelAbility is an innovative, community oriented, interdisciplinary program that uses telecommunications to improve the lives of children with disabilities. Using real time video-conferencing and internet technologies, TelAbility provides comprehensive, coordinated, family centered care to children with disabilities across North Carolina and offers education, training, and peer support for people who care for them.

North Carolina Families United

NC Families United is a family support and advocacy organization that links families to State and community partners for the purpose of improving the lives of children, youth, and families with emotional, behavioral, or mental health needs. It is the Statewide Family Network (SFN) in North Carolina.

See also General resources

North Dakota

Family Voices of North Dakota, Inc.

Family Voices of North Dakota is a Health Information and Education Center for families who have children with special health care needs: disability, chronic illness, physical, or mental health conditions. It is the Family Voices State Affiliate Organization, the federally-funded Family-to-Family Health Information Center, and the Parent-to-Parent (P2P) program in North Dakota.

North Dakota Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

North Dakota Protection and Advocacy Project

North Dakota Protection and Advocacy Project (P&A) is an independent state agency established in 1977 to advance the human and legal rights of people with disabilities. P&A strives to create an inclusive society that values each individual.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

North Dakota Federation of Families for Children’s Mental Health

ND Federation of Families for Children’s Mental Health is a parent-run organization focused on the needs of children and youth with emotional, behavioral or mental disorders and their families that provides support, advocacy, and education. It is the Statewide Family Network (SFN) in North Dakota.

See also General resources

Ohio

Ohio Family 2 Family

Ohio Family 2 Family provides training, information, and education to families navigating health care systems. They also work on improving partnerships with professionals. Thier mission is to educate all families to access quality health care for their children with disabilities and special health care needs.  It is the Family Voices State Affiliate Organization and the federally-funded Family-to-Family Health Information Center in Ohio.

Ohio Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Rights Ohio

Disability Rights Ohio provides legal advocacy and rights protection to a wide range of people with disabilities. This includes assisting individuals with problems such as abuse, neglect, discrimination, access to assistive technology, special education, housing, employment, community integration, voting and rights protection issues with the juvenile and criminal justice systems.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Special Needs Resource Directory of Southwest Ohio

The directory, developed by the Center for Infants and Children with Special Needs at Cincinnati Children’s Hospital Medical Center, includes information on issues related to advocacy, assistive technology, community services, dental care, education, employment, estate and future planning, financial assistance, guardianship, home health care, mental health, MR/DD services, nutrition resources, summer programming, therapies, transition issues, transportation, and wish-granting organizations.

Ohio Federation for Children’s Mental Health (OFFCMH)

The Ohio Federation of Families for Children’s Mental Health (OFFCMH) is a non-profit organization focused on the issues of children and youth with emotional, behavioral, or mental health needs and their families. It works to develop and implement policies, legislation, funding mechanisms, and service systems that utilize the strengths of families. Its emphasis on advocacy offers families a voice in the formation of national policy, services and supports for children with mental health needs and their families. OFFCMH is the Statewide Family Network (SFN) in Ohio.

Cincinnati Children’s

Cincinnati Children’s wants to empower families with information and resources so that you can get the best care for your child. They offer a comprehensive compilation of resources in the Southwest Ohio area. Resources unique to Kentucky and Indiana are also featured, as well as national and international website links. The resource directory covers many topics such as financial assistance, homecare, early intervention, and assistive technology.

See also General resources

Oklahoma

Oklahoma Family Network

The Oklahoma Family Network is Oklahoma’s Parent-to-Parent (P2P) program advocating for family-centered care for those who are raising children with special health care needs. It is also the Family Voices State Affiliate Organization and the federally-funded Family-to-Family Health Information Center in Oklahoma.

Oklahoma Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Oklahoma Developmental Disabilities Council

The Council promotes quality services and programs that enable persons with developmental disabilities to realize increased independence, productivity, and integration and inclusion in the community. Though not a provider of direct services, the Council has assisted thousands of Oklahomans to live, work, play, learn and worship in their own homes and in their own neighborhoods.

Oklahoma Disability Law Center

Protects, promotes, and expands the rights of people with disabilities.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

See also General resources

Oregon

Oregon Family to Family Health Information Center

The Oregon Family to Family Health Information Center (F2F HIC) provides information to families who are navigating the complex world of special health care needs. The Oregon F2F HIC is a network of parents who have firsthand experience raising a child or youth with a chronic health condition, developmental delay or disability, or emotional/behavioral challenges. Services include a toll-free number throughout Oregon that parents, caregivers, and others can call for support, resources, and information regarding special needs. The Oregon F2F HIC also provides informational workshops, a monthly newsletter, and a website clearinghouse of federal and state programs related to special needs.

Oregon Health and Science University

As Oregon’s only academic health center, OHSU has a special place in the life of Oregonians. It is a unique health and education resource for the state, and its goal is to improve the health and well being of all Oregonians.

FACTOregon: Family & Community Together

Formed in 2002, FACT (formerly the Family Action Coalition Team) is a family leadership organization for individuals and their families experiencing disabilities, working collaboratively to facilitate positive change in policies, systems, and attitudes, through family support, advocacy, and partnerships. FACT includes the Parent-to-Parent (P2P) program in Oregon.

Oregon Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Rights Oregon

En Español (Oregon)

Disability Rights Oregon (DRO) promotes opportunity, access, and choice for individuals with disabilities by assisting them with legal problems directly related to their disabilities.  It does this in a variety of ways, which include promoting awareness among people with disabilities of their rights under the law, providing information, tools and referrals that empower individuals to advocate on their own behalf, investigating and, when appropriate, addressing reports of abuse and/or neglect, representing individuals in cases where legal expertise is needed, pursuing policy changes that benefit many people with disabilities, both now and into the future, and litigation when necessary.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Oregon Health Authority Children’s Mental health System

The Oregon Health Authority aims to improve mental health services to Oregon’s children by: involving parents and youth in decisions; delivering mental health services in the community; improving inter-agency coordination; and acknowledging children’s language and cultural heritage. They also have many informational resources for youth and families. 

Childcare & Family Resources – Children with Special Needs

Childcare & Family Resources works with the College of Public and Health and Human Sciences Movement Studies in Disability Program at Oregon State Universtiy to compile a comprehensive resource guide to raising a child with a disability. They compiled a list of many programs in the community providing services for and/or supporting children with special needs and their families.

The Oregon Council on Developmental Disabilities

The Oregon Council on Developmental Disabilities is made up of self-advocates, family members, representatives of advocacy organizations and community organizations that provide services and supports to people with developmental disabilities. Our vision is that all communities welcome and value people with disabilities and their families.

NAMI Oregon

NAMI Oregon is the state chapter of the National Alliance on Mental Illness, it is a statewide organization dedicated to improving the quality of life for individuals living with mental illness, as well as their families and loved ones. NAMI Oregon leads efforts to ensure access to effective treatments and support service for those affected by mental illness. NAMI Oregon also offers education, support programs, technical assistance, and a toll-free Helpline.

See also General resources

Pennsylvania

Parent Education & Advocacy Leadership Center (PEAL)

En Español (Pennsylvania)

The PEAL Center serves families of children with disabilities and special health care needs. It provides information and training on education in Western and Central Pennsylvania, and on healthcare needs and support services statewide for parents and friends of children with disabilities, educators, health care and community service providers, and advocates. It is the Family Voices State Affiliate Organization and the federally-funded Family-to-Family Health Information Center in Pennsylvania.

Parent to Parent

Parent to Parent of Pennsylvania is a network created by families for families of children and adults with special needs. They connect families in similar situations with one another so that they may share experiences, offer practical information and/or support. It is the Parent-to-Parent (P2P) program in Pennsylvania.

Pennsylvania Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Rights Network of Pennsylvania

The mission of the Disability Rights Network of Pennsylvania is to advance, protect, and advocate for the human, civil, and legal rights of Pennsylvanians with disabilities.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

See also General resources

Puerto Rico

En Español (Puerto Rico)

Puerto Rico Title V Information

Learn about the services of the Title V Maternal and Child Health program in Puerto Rico.  

Oficina del Procurador de las Personas con Impedimentos

Oficina del Procurador de las Personas con Impedimentos guarantees the protection of rights for people with disabilities in order to achieve effective integration and participation in all areas of society. 

Instituto de Deficiencias en el Desarrollo

El Instituto de Deficiencias en el Desarrollo (IDD), a través del Centro Universitario para la Excelencia en Investigación, Educación y Servicio, ofrece adiestramiento comunitario, actividades educativas y de Educación Continuada en el campo de las deficiencias en el desarrollo. Estas actividades están dirigidas a profesionales, estudiantes, personas con impedimentos, familias y la comunidad en general.

See General resources

Rhode Island

The Rhode Island Parent Information Network (RIPIN)

The Rhode Island Parent Information Network (RIPIN) is a statewide, nonprofit agency that provides information, training, support, and advocacy to parents seeking help for their children. RIPIN is home to many projects that provide services to families with children in RI, including families of children with special needs. Projects include Family Voices, the Early Intervention Parent Consultant Program, the Family Health Parent Consultants, and the Parent Training and Information Center. It is the Family Voices State Affiliate Organization and the federally-funded Family-to-Family Health Information Center in Rhode Island.

Rhode Island Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Rhode Island Disability Law Center

Rhode Island Disability Law Center (RIDLC) provides free legal assistance to persons with disabilities. Services include individual representation to protect rights or to secure benefits and services; self-help information; educational programs; and administrative and legislative advocacy. The agency administers eight federally funded advocacy programs, each of which has its own eligibility criteria.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Parent Support Network of Rhode Island

The Parent Support Network is an organization of families supporting families with children, youth, and young adults who experience or are at risk for serious behavioral, emotional, and/or mental health challenges. PSN seeks to strengthen and preserve families and reduce family isolation by promoting positive mental health and well-being, and building a culturally and linguistically competent system of care, through advocacy, education, training, and increased public awareness. It is the Statewide Family Network (SFN) in Rhode Island.

Executive Office of Health and Human Services – Children with Special Needs

The Executive Office of Health and Human Services (EOHHS) for the state of Rhode Island contains a consumer information page. The page includes details about the services provided through EOHHS for children with special needs, such as an early intervention program and personal assistance services and supports. 

See also General resources

South Carolina

Family Connection of South Carolina

En Español (South Carolina)

Family Connection of South Carolina is a support network for families who have children with developmental delays, disabilities, or chronic illnesses. As the statewide Parent-to-Parent (P2P) program with offices in several cities, Family Connection helps thousands of children in South Carolina reach their potential by providing parent-to-parent connections, linking families to community resources, and sponsoring a number of educational and support programs. Programs are free and confidential. As parents of children with special needs, Family Connection parents know the value of talking with another parent. It is also the Family Voices State Affiliate Organization and the federally-funded Family-to-Family Health Information Center in South Carolina.

South Carolina Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Protection and Advocacy for People with Disabilities, Inc.

Established in 1977 as the protection and advocacy system for the State of South Carolina, P&A is a member of the National Disability Rights Network (NDRN) and is mandated by state and federal law to protect the rights of people with disabilities in South Carolina.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Federation of Families of South Carolina

En Español (South Carolina)

The Federation of Families of South Carolina is a nonprofit organization established to serve the families of children with any degree of emotional, behavioral or psychiatric disorder. The services and programs offered by the Federation are designed to meet the individual and varying needs of families around the state. Through support networks, educational materials, publications, conferences/workshops and other activities, the Federation provides many avenues of support for families of children with emotional, behavioral or psychiatric disorders. It is the Statewide Family Network (SFN) in South Carolina.

See also General resources

South Dakota

South Dakota Parent Connection, Inc.

En Español (South Dakota)

South Dakota Parent Connection, Inc. is a Parent Training and Information Center formed by parents, educators, and services personnel to provide information and training to parents of children with disabilities or special needs throughout the state of South Dakota. It is the Family Voices State Affiliate Organization and the federally-funded Family-to-Family Health Information Center in South Dakota.

South Dakota Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

South Dakota Advocacy Services

South Dakota Advocacy Services’ mission is to protect and advocate the rights of South Dakotans with disabilities through legal, administrative, and other remedies.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

See also General resources

Tennessee

Tennessee Disability Coalition

The Coalition is an alliance of organizations and individuals in Tennessee that have joined to promote the full and equal participation of men, women, and children with disabilities in all aspects of life. It is the federally-funded Family-to-Family Health Information Center and the Parent-to-Parent (P2P) program in Tennessee.

Tennessee Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Rights TN

Formerly known as the Disability Law & Advocacy Center of Tennessee, Disability Rights Tennessee (DRT) provides services to people with disabilities across the state on numerous issues, including employment discrimination, safety in schools, abuse and neglect, and access to community resources and services.

kidcentral tn

Created by the Tennessee Children’s Cabinet, this resource integrates various programs throughout the state and allows families to find local resources for health, education, and development. The site also includes a personalized profile for families to customize.

Family Information Notebook (FIN)

The FIN Project is an information exchange system for use among caregivers and health care, educational, faith-based, recreational, and other community systems that care for a child with special health care needs.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Le Bonheur Children’s Hospital

Le Bonheur Children’s Hospital partners with a variety of organizations to help children with special needs and their families get the resources they need. This page offers a list of partnering organizations in Tennessee, Arkansas, and Mississippi.

Vanderbilt Kennedy Center

The Vanderbilt Kennedy Center is one of fourteen National Developmental Disabilities Research Centers supported in part by the National Institute of Child Health and Human Development. It provides research, services, and information.

See also General resources

Texas

Texas Parent to Parent Network

Texas Parent to Parent provides peer support, resource, and referral information and advocacy. It is the Family Voices State Affiliate Organization, the federally-funded Family-to-Family Health Information Center, and the Parent-to-Parent (P2P) program in Texas.

Texas Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Rights Texas

En Español (Texas)

Disability Rights Texas is the federally designated legal protection and advocacy agency (P&A) for people with disabilities in Texas. Its mission is to help people with disabilities understand and exercise their rights under the law, ensuring their full and equal participation in society.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Partners Resource Network (PRN)

PRN is the non-profit agency awarded three PTI Projects, which now cover the entire state of Texas. These projects operate independently but do share some central administrative functions. All the projects share the common purpose of empowering parents of children and youth with disabilities in their roles as parents, decision makers, and advocates for their children.

Navigate Life Texas

En Español (Texas)

This website was created for families and parents of children with disabilities or special health-care needs and is designed to offer support, inspiration, resources, and links to services available.

See also General resources

Utah

Family Voices Health Information Center

Utah Family Voices is all about supporting families of the disabled and is run by parents of special needs children. It is the federally-funded Family-to-Family Health Information Center in Utah.

Utah Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Law Center

Since 1979, the Disability Law Center (DLC) has helped thousands of Utahns with disabilities and their families. The DLC has broad statutory powers to safeguard the human and civil rights of persons with disabilities. It provides self-advocacy assistance, legal services, disability rights education, and public policy advocacy on behalf of the more than 300,000 Utah residents with disabilities. Its services are available statewide and without regard for ability to pay.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Utah Parent Center (UPC)

En Español (Utah)

The mission of the PPC is to help parents help their children with disabilities to live included, productive lives as members of the community.

Allies With Families

Allies with Families offers practical support and resources for parents and their children with emotional, behavioral, and mental health needs. It is the Statewide Family Network (SFN) in Utah.

Utah Registry of Autism and Developmental Disabilities

The Utah Registry of Autism and Developmental Disabilities (URADD) studies the prevalence of autism spectrum disorders and other developmental disabilities in Utah over time in order to inform public policy decisions, improve community awareness, assist in the identification of risk factors, and identify underserved populations. They also offer connections to parent and support organizations, public health services, and legal services.

See also General resources

Vermont

Vermont Family Network

The organization provides information, support, advocacy, and promotes family-centered policies and practices. It is the Family Voices State Affiliate Organization, the federally-funded Family-to-Family Health Information Center, and the Parent-to-Parent (P2P) program in Vermont.

Vermont Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Rights Vermont

Disability Rights Vermont is a statewide agency dedicated to advancing the rights of people with disabilities and mental health issues. It supports human and civil rights by investigating complaints of abuse and neglect (physical or sexual assault, verbal & physical abuse, restraint and seclusion, forced treatment, and harassment), and complaints of violations of individual rights (the right to refuse treatment, right to privacy, access to medical records, confidentiality, etc.) Disability Rights Vermont is separate and independent from all state agencies, hospitals, and community mental health centers.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Vermont Federation of Families for Children’s Mental Health, Inc.

The Vermont Federation of Families for Children’s Mental Health exists to support families and children where a child or youth, age 0-22, is experiencing or at risk to experience emotional, behavioral, or mental health challenges. It is the Statewide Family Network (SFN) in Vermont.

The Children’s Hospital at Dartmouth Hitchcock Family Center

The Children’s Hospital at Dartmouth Hitchcock (CHaD) Family Center can help families and professionals find information on parenting, illness, and disabilities. While the center is located in New Hampshire, Vermont residents can find state specific resources, on the Vermont Resources page. 

See also General resources

Virginia

Partnership for People with Disabilities at Virginia Commonwealth University

The mission of Partnership for People with Disabilities is to partner with people with disabilities and others to build communities where all people can live, learn, work, and play together.

The Center for Family Involvement at Virginia Commonwealth University

The Center for Family Involvement is part of the Partnership for People with Disabilities at Virginia Commonwealth University. The center works with families to increase their skills as advocates, mentors, and leaders so that families, children and young adults with disabilities can lead the lives they want. It is the federally-funded Family-to-Family Health Information Center and the Parent-to-Parent (P2P) program in Virginia.

Virgina Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

disAbility Law Center of Virginia

The disAbility Law Center of Virginia provides protection and advocacy for individuals with disabilities by advancing independence, choice, and self-determination; protecting legal, human and civil rights; and eliminating abuse, neglect, and discrimination of people with disabilities.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Parent Educational Advocacy Training Center

En Español (Virginia)

The Parent Educational Advocacy Training Center assists the families of children with disabilities through education, information, and training.

NAMI Virginia

The National Alliance on Mental Illness (NAMI) Virginia provides support, education, and advocacy for individuals and families in Virginia affected by mental illness. Along with their community-based affiliates, they provide education, support, information, training, and resources, and engage in systems change policy advocacy. It is the Statewide Family Network (SFN) in Virginia.

See also General resources

Washington

PAVE

PAVE is a parent directed organization that works with families, individuals with disabilities, professionals, and community members in all walks of life and with all types of disabilities. It is the Family Voices State Affiliate Organization and the federally-funded Family-to-Family Health Information Center in Washington.

Washington State Parent to Parent Support Programs

En Español (Washington)

Washington State Parent to Parent provides emotional support and information to families of children with special needs and/or disabilities. It is the Parent-to-Parent (P2P) program in Washington.

Washington Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Rights Washington

Disability Rights Washington (DRW) is a private non-profit organization that protects the rights of people with disabilities statewide.  Its mission is to advance the dignity, equality, and self-determination of people with disabilities.  It works to pursue justice on matters related to human and legal rights. It provides free advocacy services to people with disabilities.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

The Center for Children with Special Needs

The Center for Children with Special Needs is a program at Seattle Children’s, which provides information and resources for families and professionals. The Center’s website contains information such as a summer camp directory by health condition, resources for caregivers, and adolescent transition tools.

See also General resources

West Virginia

West Virginia Parent Training and Information (WVPTI)

WVPTI is a statewide cross disability, parent/professional, private non-profit group. It is the federally-funded Family-to-Family Health Information Center in West Virginia.

West Virgina Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

West Virginia Advocates

West Virginia Advocates, Inc. (WVA) is the federally mandated protection and advocacy system for people with disabilities in West  Virginia. WVA is a private, non-profit agency. Their services are confidential and free of charge.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Mountain State Parent, Child, and Adolescent Network

The Mountain State Parents Child and Adolescent Network (MSP-CAN) promotes reforms in the service delivery system through a continuum of interrelated activities that educate and support parent, inform practitioners, and administrators and policy makers. It is the Statewide Family Network (SFN) in West Virginia.

West Virginia Developmental Disabilities Council

The West Virginia Developmental Disabilities Council’s mission is to assure that West Virginia citizens with developmental disabilities receive the services, supports, and other forms of assistance they need to exercise self-determination and achieve independence, productivity, integration, and inclusion in the community. The Council provides training and technical assistance to build competent and inclusive communities.

Children with Special Health Care Needs Program

The goal of the Children with Special Health Care Needs (CSHCN) Program is to improve the health and well-being of children with special health care needs by connecting families with trained Care Coordinators. Care Coordinators can work with families to arrange for early care, schedule medical exams and tests, get medical treatment, and plan to make sure all needed care is arranged.

See also General resources

Wisconsin

Family Voices of Wisconsin

Family Voices of Wisconsin is a network of families who have children with special health care needs and/or disabilities and those who work on their behalf. It focuses its efforts on working with its partners to support the voice of families to inform and influence public policy on behalf of children and families. It is the Family Voices State Affiliate and the federally-funded Family-to-Family Health Information Center in Wisconsin.

Parent to Parent of Wisconsin

En Español (Wisconsin)

Parent to Parent of Wisconsin provides the one-to-one connection for parents new to having a child with special needs, experiencing a time of stress or simply seeking support, resources, and information with another parent who has been there. It is the Parent-to-Parent (P2P) program in Wisconsin.

Wisconsin Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Disability Rights Wisconsin

En Español (Wisconsin)

Disability Rights helps people across Wisconsin gain access to services and opportunity through its advocacy and legal expertise. It regularly challenges systems and society to create positive change and improve the lives of people with disabilities.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Advocacy and Benefits Counseling (ABC) for Health

ABC for Health is a Wisconsin-based, nonprofit, public interest law firm dedicated to ensuring health care access for children and families, particularly those with special needs or who are at risk. ABC for Health’s mission is to provide health care consumers with the information, advocacy tools, legal services, and expert support they need to navigate through America’s complex and confusing health care financing system.

Wisconsin Family Assistance Center for Education, Training & Support, Inc. (WI FACETS) – Parent Training & Information Center

En Español (Wisconsin)

WI FACETS is a nonprofit organization serving Wisconsin children and adults with disabilities, their families and those who support them.

Wisconsin Family Ties

Wisconsin Family Ties works to create greater understanding, respectful acceptance, and support in the community for families that include children and adolescents with emotional, behavioral, and mental disorders. It is the Statewide Family Network (SFN) in Wisconsin.

Wisconsin Board for People with Developmental Disabilities

Wisconsin Board for People with Developmental Disabilities (BPDD) believes that all people with developmental disabilities should be fully included in the community. BPDD’s current State Plan focuses on self-determination, employment, and self-advocacy projects. They offer yearly conferences, toolkits, and informational resources.

See also General resources

Wyoming

Wyoming Institute for Disabilities at the University of Wyoming

The Wyoming Institute for Disabilities (WIND) assists individuals with developmental and other disabilities and their families by promoting and supporting full community inclusion, community membership, independence, productivity and social participation. It is the federally-funded Family-to-Family Health Information Center.

UPLIFT

UPLIFT encourages success and wellness for families, children, youth, and young adults with or at risk of emotional, behavioral, or learning disorders, disabilities, and other special health care needs. It is the Statewide Family Network (SFN) in Wyoming and a Family-to-Family Wyoming partner.

Parents Helping Parents of Wyoming, Inc.

En Español (Wyoming)

Parents Helping Parents of Wyoming, Inc is a private, non-profit organization founded in 1990. Governed by a board of directors, the majority who are parents or family members of children with disabilities, PHP ‘s mission is to help families become more active in their children’s learning and education, to serve and support children with and without disabilities through advocacy, education, and referral.

Wyoming Title V Information

Learn about the services of the Title V Maternal and Child Health program in your state. 

Wyoming Protection & Advocacy System, Inc.

The mission of Wyoming Protection & Advocacy System, Inc. is to establish, expand, protect and enforce the human and civil rights of persons with disabilities through administrative, legal, and other appropriate remedies.

Consumer Assistance Programs

On this national site, you can enter your zip code to find a list of resources in your area. Consumer Assistance Programs exist across the country and help people to access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have.

Wyoming Early Hearing Detection and Intervention Directory

Wyoming has 14 Child Development Center Regions with various sites throughout the state. These Child Development Centers provide hearing screenings and intervention programs free of charge for children ages birth through five. Families can contact the site in their area with questions.

Wyoming Governor’s Council on Developmental Disabilities

The purpose of the Wyoming Governor’s Council on Developmental Disabilities is to assure that individuals with developmental disabilities and their families participate in and have access to needed community services, individualized supports and other forms of assistance that promote independence, productivity, integration and inclusion in all facets of community life.

Wisconsin Public Health Information and Referral Services

Public health hotlines have been developed to help meet the service needs of children with special health care needs. The hotlines are answered 24 hours/day by professional Information and Referrals Specialists. The Specialists will refer callers statewide to the most appropriate agencies.

General Resources

Consumer Assistance Programs

Consumer Assistance Programs help people access health insurance, including Medicare, Medicaid, and private health plans. They can also assist individuals who encounter difficulties using the health benefits they have. On this site, you can enter your zip code to find a list of resources in your area.

The Morgan Project

The M.O.R.G.A.N. Project, a 501(c)3, was created by two parents as a tribute to their son with complex health needs. The mission of this national, community-based organization of volunteers is to promote awareness, facilitate support, and enhance the quality of life for families with children with special health care needs. Visit this site to learn about financial resources, used equipment exchanges, research and clinical studies, support groups, links to additional resources, and more.

Young Invincibles – Health Care 

Healthy Young America, created by Young Invincibles, a national organization dedicated to representing the interests of 18 to 34-year-olds, provides answers to frequently asked insurance-related questions targeted to this age group.

The Arc: For people with intellectual and developmental disabilities

The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes. Learn more and connect with the Arc chapter in your state.

National Disability Rights Network (NDRN)

NDRN is the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems (linked into state information above) and Client Assistance Programs (CAP). CAPs, many of which are housed within P&A offices, provide information and assistance to individuals seeking or receiving vocational rehabilitation (VR) services under the Rehabilitation Act, including assistance in pursuing administrative, legal and other appropriate remedies. Collectively, the P&A/CAP network is the largest provider of legally based advocacy services to people with disabilities in the United States.

The National Patient Safety Foundation (NPSF)

The National Patient Safety Foundation, a central voice for patient safety, is an independent, 501(c)(3) organization working to improve the safety of care provided to patients. The Patients and Consumers section has key facts, tips and tools, and links for additional information.

The Center for Parent Information and Resources (CPIR)

The Center for Parent Information and Resources serves as a central resource of information and products to the community of Parent Training Information (PTI) Centers and the Community Parent Resource Centers (CPRCs), so that they can focus their efforts on serving families of children with disabilities. CPIR is also the new home for English and Spanish legacy materials from the National Dissemination Center for Children with Disabilities (NICHCY).

Patient Advocate Foundation (PAF)

En Español (Recursos Generales)

The Patient Advocate Foundation provides mediation and arbitration services to patients to remove obstacles to healthcare including medical debt crisis, insurance access issues and employment issues for patients with chronic, debilitating and life-threatening illnesses.

The National Center for Education in Maternal and Child Health (NCEMCH)

The NCEMCH houses an MCH knowledge base and library collection Library, which includes many resource guides and briefs for families and the professionals with whom they partner to ensure CYSHCN have access to services within a coordination system of care. Topics include Adequate Insurance Coverage, Autism Spectrum Disorder, Children and Youth with Special Health Care Needs, EPSDT in Medicaid, Spanish Language Health Resources, and more.

American Association on Health and Disability

The American Association on Health and Disability (AAHD) is a cross-disability national non-profit committed to promoting health and wellness initiatives for children and adults with disabilities. AAHD has many projects, such as maintaining a Health Promotion Resource Center (HPRC), partnering with health care organizations, research institutions and federal agencies, providing technical assistance, and disseminating information.

Special Populations

American Indians and Alaska Natives: How to Use Your New Health Insurance

HHS has created resources to assist American Indians and Alaska Natives in understanding and using health care coverage.  Resources include:

Military Families: Exceptional Family Member Program 

Through its Exceptional Family Member Program (EFMP) the National Military Family Association provides training, resources, and other family supports for military families whose family members have special needs.

Special Populations

The Centers for Medicare and Medicaid Services (CMS) has created a list of resources on health care for targeted populations, including individuals with disabilities, immigrants, refugees, children, African Americans, Hispanics and Latinos, Asian Americans/Native Hawaiians/Pacific Islanders, and American Indians and Alaska Natives. Topics include the Affordable Care Act (ACA), the Marketplace, and public insurance among others.

Other MCHB-supported National Centers

En Español

National Center for Family/Professional Partnerships

The National Center for Family/Professional Partnerships, a project of Family Voices, focuses on supporting and developing family and youth leadership, particularly the leadership of racially and ethnically diverse families of CYSHCN. The center works to promote the engagement of diverse families in meaningful ways in systems level activities and encourage the reduction of health disparities through family engagement.

The National Center for Medical Home Implementation

The National Center for Medical Home Implementation is focused on ensuring all children and youth—particularly those with special health care needs—have access to a medical home.
The center achieves this goal through: developing and distributing tools and resources; providing technical assistance and support to practices, clinicians, families, communities, and states; and
collaborating with local, state, and national partners to facilitate partnership and medical home system change.

Got Transition – National Center for Health Care Transition Improvement 

Got Transition (The National Center for Health Care Transition Improvement) aims to improve the transition from pediatric to adult health care through the use of new and innovative strategies for health professionals and youth and families. They are working to: expand the use of the Six Core Elements of Health Care Transition; partner with health professional training programs to improve knowledge and competencies in providing effective health care transition supports; develop youth and parent leadership; promote health system measurement, performance, and payment policies aligned with the Six Core Elements of Health Care Transition; and serve as a clearinghouse for current transition information, tools, and resources.

Data Resource Center for Child and Adolescent Health

The mission of the Data Resource Center for Child and Adolescent Health (DRC) is to advance the effective use of public data on the status of children’s health and health-related services for children, youth and families in the United States. The DRC includes national and state-based data from the National Survey of Children’s Health and the National Survey of Children with Special Health Care Needs.

National Maternal and Child Health Workforce Development Center 

The National Maternal and Child Health (MCH) Workforce Development Center at UNC Chapel Hill offers Title V leaders and their partners training, collaborative learning, coaching and consultation in implementing health transformation using a variety of learning platforms. The center provides free services to states and territories ranging from a simple telephone consultation to online resources to intensive technical support.

National Center for Care Coordination Technical Assistance

The National Center for Care Coordination Technical Assistance (NCCCTA) is a partnership between the National Center for Medical Home Implementation and Boston Children’s Hospital Integrated Care Program. The mission of the NCCCTA is to support the promotion, implementation, and evaluation of care coordination activities and measures in child health across the United States. 

National Center for Hearing Assessment and Management

The National Center for Hearing Assessment and Management is a multidisciplinary center whose goal is to ensure that all infants and toddlers with hearing loss are identified as early as possible and provided with timely and appropriate audiological, educational, and medical intervention.

National Center for Children’s Vision and Eye Health

The National Center for Children’s Vision and Eye Health supports the development of a public health infrastructure to promote and ensure a comprehensive, multi-tiered continuum of eye health and vision care for young children.  The Center serves as a major resource for providing leadership development, health promotion, communication, and marketing, as well as education and training to public and private entities throughout the United State.