Family Resources, Support Groups and Community Organizations for Individuals with Disabilities, their Families and Caregivers: New Horizons Un-Limited

Family Resources, Support Groups and Disability Specific Organizations

Visit this link for Family Resources for Specific Disabilities

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United Kingdom

National

Shutterfly is a place that you can set up a free family account to share family photos and messages with friends and family on the Internet in a gated community.

Family Voices is a national, grassroots clearinghouse for information and education concerning the health care of children with special health needs. Their website shares much information on health care policy and other issues relating to specialized health care. The site also offers links to helpful state and national health care resources, a listing of publications and fact sheets and much more. For information on how to become a member, call (888) 835-5669 or e-mail kidshealth@familyvoices.org.

Father's Network is a national organization dedicated to supporting fathers who are raising a child with a disability. They facilitate programs throughout the United States that offer support and mentoring programs, parent training and workshops, and more. They also offer a website that offers articles submitted by fathers of children with disabilities, resource links and a bulletin board. For more information, call (425) 747-4004, ext. 218 or visit their website.

Support for Families With Special Needs Resources is now on the Military One Source website under Troops and Families: Special Needs. This program provides information on services and resources available to military families with special medical or educational needs. More specifically, the website features resources and information on financial issues, legal issues, medical care, education and family support. Members of the network can also contact other military families with special needs to share solutions to common problems. For more information, visit this website.

MUMS is a National Parent to Parent Network, based in Green Bay, Wisconsin, which maintains a database of parents who have children with disabilities and are in need of peer support. MUMS matches parents throughout the United States according to age, geographical location, gender, and severity of their child's symptoms. If you are interested in joining the MUMS parent network, call (877) 336-5333 or e-mail mums@netnet.net.

National Alliance for the Mentally Ill offers the Family to Family Education Program; a free 12-week course for family caregivers of individuals with severe brain disorders (mental illnesses). The course, available in communities throughout the United States, focuses on schizophrenia, bipolar disorder (manic depression), clinical depression, panic disorder and obsessive-compulsive disorder (OCD). The course discusses the clinical treatment of these illnesses and teaches the knowledge and skills that family members need to cope more effectively. For course locations, visit their website or call (800) 950-NAMI (6264).

Best Beginnings: Baby Buddy offers valuable information for parents with disabilities and their families. The website features the parent empowerment network, which connects parents through an app, which can facilitate a discussion on such subjects as accessible / independent parenting, societal attitudes toward parents with disabilities, pregnency, childbirth, and reproductive health issues, as well as general issues of child care and child rearing. The site also features helpful links, medical information, adaptive parenting aid information, and personal stories contributed by visitors.

Sibling Support Project is a National program dedicated to providing support for brothers and sisters of individuals with special health or developmental needs. The website offers a newsletter, as well as a listing of resources such as books, newsletters, videos, and movies related to those individuals who have a special-needs sibling. The project also offers a number of helpful workshops throughout the Seattle, Washington area concerning "Life-Long Issues Faced by Brothers and Sisters." For more information about this project, visit their website. If you would like to learn more about the workshops, call (206) 297-6368.

Snap4 kids: Organizations this is a comprehensive directory list by state of organizations for families with kids with disabilities. Under organizations, you will find educational consultants, psychologists, educational diagnosticians, health care providers, academic therapists, tutors, speech language therapists, occupational therapists, coaches, advocates, and attorneys for children with disabilities. You will also find special education schools, learning centers, treatment programs, parent groups, respite care, community centers, grassroots organizations, and government programs for children with disabilities.

Special Needs Family Fun is an on-line community offering family fun and special needs resources to enhance the quality and fun of family life for families with disabilities. Their website offers a resource directory, an interactive chat room, an eGroup Forum and a multi-subject bulletin board.

Through the Looking Glass is a non-profit organization that serves families with one or more disabled persons in their family, parent or child. They have created clinical and supportive services, training and research .

State Listings

Alaska

LINKS Mat-Su Parent Resource Center is a non-profit agency dedicated to providing information, support, and assistance to parents of children with disabilities, their professional partners, and their communities. The Agency provides support and education, parent-to-parent connections, parent mentors, information and referral, and access to library materials. Services are provided through one-on-one assistance and individualized workshops for small or large groups. For more information, visit their website or call (907) 373-3632.

Mat-Su Services for Children and Adults, Inc. (MSSCA) is a non-profit corporation serving the Mat-Su Borough of Alaska. MSSCA offers a Family Support program, which supports individuals with developmental disabilities and their families so that personal and / or family crisis can be averted or minimized. In support of this program they offer information and referral, short term case management, crisis respite, advocacy and technical assistance. The Division of Mental Health and Developmental Disabilities (DMHDD) determines eligibility for this program. For more information, call (907) 352-1200 or e-mail mssca@mssca.org.

Stone Soup Group is a Parent Training and Information project for the state of Alaska, a statewide non-profit organization based in Anchorage, Alaska that provides support and assistance to families caring for children & youth with special needs. and a listing of additional helpful disability resources throughout Alaska. For more information, check out this website.

California

Family Focus Resource Center understands and strengthens families raising children with special needs through education, advocacy, and family support services. For more information contact the Family Focus Resource Center San Fernando Valley (Main Office), 18111 Nordhoff Street, E-109, Northridge, CA 91330-8265 or Phone: (818) 677-6854 or send e-mail to: family.focus@csun.edu

Loving Your Disabled Child Community Parent And Family Resource Center, a parent-run center in Los Angeles, works to provide parents and families of children with disabilities emotional, educational, and spiritual support. More specifically, they offer a lending library, monthly parent support groups, parent to parent peer support, telephone support, the New Discoveries newsletter, computer and Internet access, educational workshops, home visits and parent advocacy. For more information, call (323) 373-0323.

Parents Helping Parents, located in Santa Clara, California, is a non-profit family resource center run for and by parents of children with special needs. They offer a number of services and programs, which include a comprehensive community resource library, support groups, information and referral, parent training, and much more. For more information, call (408) 727-5775 or e-mail general@php.com.

Colorado

Community Connections offers unique and community-based services to children and adults with developmental disabilities. The Family Support Program strives to relieve some of the emotional and financial stress families experience with a family member with a developmental disability. Families can use Family Support funding for respite care, educational or therapeutic materials for their child, to attend workshops to learn more about their child's disability, for medical treatments and therapies that are not covered by insurance, to help pay often astronomical medical bills, for travel expenses to surgeries and follow-up care, for home modifications, or for recreational and social activities for their child and his siblings. The Family Support program is funded through the state general fund, and in Southwest Colorado, they can provide further needed support through local United Way funding for families with children who do not meet the state criteria for eligibility. For more information, contact The Columbine Center, 281 Sawyer Drive, Suite 200, Durango, Colorado 81303, phone: 970.259.2464, fax: 970.259.2618 or send e-mail to cciboard@cci-colorado.org.

Florida

Lift Disability Network, Inc., located in Orlando, Florida, is a faith-based organization with a mission to connect the disability family through family support programs and life learning. They offer discussion groups, community support groups and professional family counseling. For more information, call (407) 228-8343 or e-mail eleos@eleos.org.

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. Their mission is to ensure, through collaboration, that Floridians have full access to family-driven support, education, information, resources and advocacy. They also offer a "Friend-to-Friend" network through which families are referred to other families in the network. For more information, visit their website, e-mail fnd@fndusa.org or call (800) 825-5736.

Georgia

FOCUS - Families of Children Under Stress, a non-profit organization based in Atlanta, provides emotional, informational, and physical support to parents of children with disabilities or with ongoing medical needs. FOCUS provides a network of parents who share common experiences with each other. They also offer a variety of fun family oriented events throughout the year. To learn how FOCUS can help your family, call (770) 234-9111 or e-mail focus-ga@mindspring.com.

Parent to Parent of Georgia, a non-profit organization, offers information and support to parents of children with disabilities. They offer a special needs database of information, one-on-one parent support, parent support groups, as well as an online parent message board. They also offer an informative quarterly newsletter. For more information, call (800) 229-2038.

Hawaii

Special Parent Information Network (SPIN) is a parent to parent organization in Hawaii that provides information, support and referral to parents of children and young adults with disabilities and the professionals who serve them. They provide an informative website and newsletter offering the latest in legislative and disability news. For more information, visit their website, call (808) 586-8126 (Voice/TTY) or e-mail accesshi@aloha.net.

Illinois

Family Resource Center on Disabilities (FRCD), based in Chicago, offers support and advocacy to families of children with disabilities. Services include information and referral, their Family Support Project, through which they offer individualized family service plans, linkage to needed services, support groups and advocacy and direct financial assistance, and their Parent-To-Parent Training Project, which offer opportunities for parent leaders to become effective trainers in their own communities. To learn how the Center can help your family, call them at (312) 939-3513, (312) 939-3519 (TDD) or (800) 952-4199 (outside of Chicago).

Louisiana

Families Helping Families of New Orleans is a non-profit, family directed resource center for individuals with disabilities and their families. They offer Parent Liaisons who provide information, referrals, education, training and one to one support to families. They also provide information on special education to parents and professionals. Their Support and Training to Access Rights (STAR) Project assists adults and young adults with disabilities in gaining access to services that enable them to reach their full potential for working and living in the community. For more information, call 504-943-0343 or e-mail info@fhfsela.org.

Massachusetts

The Association for Community Living a non-profit organization based in Springfield, offers services, advocacy and education for the developmentally disabled and their families of Western Massachusetts. Via their Family Support Service, they offer Support Groups, including Person Centered Planning, Family to Family, Latino Group and Sibling Support (Sibshops), Information and Referral, Teen Self-Advocacy Programs, Flexible Family Support Funds and Grants/Private Funds. To learn how the Association can help your family, call (800) 337-7791.

New Hampshire

New Hampshire Family Voices Care of children with special needs can be chronic and complex. Parents and caregivers often struggle to find the resources and services their child needs. NH Family Voices is in a unique position to help families because they are parents who have children/youth and young adults with special health care, physical, developmental and mental health challenges. They understand the challenges families face. They identify children with special health care needs based on the impact on their lives and their families' need for related services, rather than only on their diagnosis.

They operate a "Family To Family Health and Education Center", and several projects, each with a specific focus on different ways they can help families supporting children with special needs to become informed, experienced, self-sufficient advocates for their children and themselves. There is no charge for the services they provide. They are funded by state and federal grants, as well as donations from community partners and supporters.

New Jersey

Family Resources Associates is a New Jersey non-profit agency located in Shrewsbury, NJ that offers services and a center for families with infants, children, adolescents and adults who are developmentally delayed or disabled. FRA's mission is to enhance the competency of the family and to strengthen the capabilities of each individual with a disability. FRA provides home-based early intervention for infants, therapeutic recreation programs and assistive technology services, along with family and sibling support groups. Their service area for home-based therapy is Monmouth County, NJ. Many of their assistive technology services are provided throughout the State of New Jersey. FRA offers services for any family with a child or family member with Down syndrome. These services include parent support, peer support, library, information, news, workshops and scholarships. To contact FRA call (732) 747-5310 or e-mail them at info@frainc.org.

Family Support of New Jersey is the "one-stop-shop" clearinghouse on all disabilities. The center offers up-to-date information on local, state, and national support services for those affected by disabilities and a comprehensive array of FREE services. Contact the Family Support Center of New Jersey via phone, (800) 372-6510 (NJ only) or send e-mail using the form on their website.

Ohio

Ohio's Legal Rights Service (FSC) provides information about supports and services for Ohio families who have children with disabilities. Their website offers information and resources on advocacy as well as medical, financial, and educational issues. They also focus on planning with many publications for families with children with disabilities under the link above "Children with Disabilities:" Parents Finding Support or the Family Friendly Checklist. For more information, call (800) 282-9181 (Voice)(toll-free in Ohio only) or (800) 858-3542 (TTY)(toll-free in Ohio only).

Ohio SIBS (Special Initiatives by Brothers and Sisters) offers information and referral resources, support services and advocacy for adult siblings who have a variety of issues and responsibilities regarding their brothers and sisters with disabilities. On their website they offer answers to frequently asked questions, sibling stories, a listing of Ohio support groups and more. Visit their website to learn how you can get involved.

Special Needs Resource Directory created by the Complex Care Center at Cincinnati Children�s and supported by the Family Resource Center, can assist parents, caregivers and healthcare providers identify, evaluate and access necessary services and supports. Focused on children and youth with special health needs who have physical, developmental, behavioral or emotional conditions, the directory connects to local, regional and national websites to help you. For more information call our Family Resource Center at 513-636-7606 with your questions.

South Carolina

Family Connection of South Carolina is a support network for families who have children with special needs, providing parent-to-parent connections, linking families to community resources, and sponsoring a number of educational and support programs. Programs include the Family Partner Program, through which they link trained veteran parents of children with special needs to other parents of children with special needs, Family Respite Cooperatives, a volunteer program to give parents a break from in-home care, Support Groups, and Family Social Events, among others. To learn how this organization can help your family, call (800) 578-8750 or e-mail info@familyconnectionsc.org.

Family Resource Center for Disabilities and Special Needs promotes opportunities for learning, inclusion, and empowerment for individuals with disabilities and special needs, their families, and their communities. 1575 Savannah Highway, Ste. 6, Charleston 29407, Phone: (843) 266-1318, Fax: (843) 266-1941 , or send E-mail to: frc@frcdsn.org

Vermont

Vermont Family Network, is a statewide network of support and information for families who have a child with special needs or disabilities, and the professionals who work with them. They offer family consultations which provide information on education programs, specific disabilities, and community resources. They also provide relevant articles, fact sheets and brochures. They also run an Assistive Technology Center that includes two programs � an adaptive equipment and software try out program and an information and referral program. For more information, call 1-800-800-4005.

Wisconsin

Developmental Disabilities Information Service, INC. is a private non-profit agency serving adults and children in the Southeast Region of Wisconsin who are diagnosed with developmental delays encompassing severe emotional or physical disabilities that create substantial limitations in pursuing daily activities. DDIS provides the services listed below through contracts with Luxvida LLC, Racine County Human Services Department, Community Care Organization, Inc. and private pay agreements.

Compass Wisconsin: Threshold (Racine//Kenosha/Walworth Counties)
Family Support Service Coordination (Racine County)
Children�s Long Term Support Service Coordination (Racine County) (Includes Specific Waiver for Autism Treatment Services)
Protective Payee Services/Fee for Service (Racine County)
Daily Living Skills Training (Racine County)
Supportive Homecare Program (Racine County)

For more information, contact the Developmental Disabilities Information Service,INC., 1220 Mound Ave Suite 312, Racine, WI 53404, Phone (262) 637-2707, Fax (262) 637-0266 and info@ddisracine.org

Easter Seals Wisconsin offers a range of services to families of people with disabilities. Among them is their Respite Camp, which offers weekend or week-long camps for children and adults with mild to severe physical or cognitive disabilities. Their camp welcomes those who are often turned away by other programs due to requiring more individual attention. The Wisconsin Elks/Easter Seals Respite Camp is a fully accessible facility on 400 acres located near Wisconsin Dells, WI. Campers are matched one-on-one with a trained counselor in order to provide the best possible care. Medical care is provided by a nurse, who is on site 24 hours a day. If you need a break, the Respite camp is a great option. Easter Seals Wisconsin subsidizes about 40% of the actual cost for an individual to attend Respite Camp. (Actual costs are $625 for weekend sessions and $1,345 for a one week session). The remaining 60% must be provided by the camper or secured through other sources. To learn more, call (800) 422-2324 (toll-free), (608) 277-8031 (TTY).

Family Friends is a program offered by the Coalition of Wisconsin Aging Groups (CWAG) in collaboration with United Cerebral Palsy (UCP) of Southeastern Wisconsin. It is a unique intergenerational program offering older adults the opportunity to make a difference in the lives of children with special needs. The project pairs trained volunteers, aged 55 and older, with families who are caring for a child with a disability. The volunteer provides the family with support by sharing skills, by lending an ear and by simply offering a caring presence. If you are interested in getting involved with such a program, contact Becky Hipp, Project Director of the Family Friends program at (414) 329-4500.

Family Support and Resource Center provides in-home and community support to families in Dane County who are raising children with significant disabilities at home. Their Respite Care Program provides short-term, in-home care of a Dane County child or adult with developmental disabilities. Their Family Support Program offers financial assistance, information, and case management to Dane County families who are raising a child with significant disabilities at home. Their Community Inclusion Program facilitates connections between children with disabilities and their families and the larger Dane County community. To learn how the Center can help your family, call (608) 237-7630.

Hearthstone of Wisconsin of Sheboygan, Wisconsin, is above all a self-help organization designed to offer families of individuals with developmental disabilities assistance, guidance, advocacy and support in transition to community-based living. They are an excellent source of information and can help you plan for the most independent lifestyle possible for your loved one with a disability. They also plan a number of fun social events and can help you look for ways to develop "natural" friendships. For more information, call (920) 467-6481.

Parent to Parent: Wisconsin Support is the opportunity for parents raising children with special needs to connect with another parent who has already learned the language and found the resources�someone who has �been there.� Parent to Parent of Wisconsin provides parent support to parents of children with special needs through a one-to-one connection with another parent who has similar experience and who knows firsthand about the feelings and realities that come with having a child with special needs. Become a Support Parent. Support Parent Trainings for parents raising children with special needs that feel they are ready to become a Support Parent are held periodically throughout the state. Training dates can be found on their Trainings page.

Southeast Regional Center, serving Southeastern Wisconsin, offers information and referral services to families of children with special needs which include recommendations of books, articles, videos and websites related to diagnosis, education, community living, emotional supports and more. They also offer parent connections and support via support groups, the county parent liaison program and parent training. You can contact the Special Needs Family Center by calling (414) 266-NEED or toll free at (800) 234-KIDS or by e-mail at snfc@chw.org.

VICTORE (Visually Impaired Children: The Opportunities, Responsibilities and Expectations) offers programming for families with school-aged children who are blind or visually impaired, all free of charge. VICTORE is a collaborative project between the Center for Blind and Visually Impaired Children and the Badger Association of the Blind. They offer a variety of events throughout the year. They also offer an informative website, which features links to various helpful organizations and community resources. For more information, call (414) 355-3060.

Waisman Center is dedicated to the advancement of knowledge about human development, developmental disabilities, and neurodegenerative diseases. The Waisman Resource Center is a collection of several center-based programs that provide information and assistance to individuals who have questions about services and programs related to developmental disabilities and other special health care needs.

The Regional Centers for Children With Special Health Care Needs offer information and referral services to families of children with special needs which include recommendations of books, articles, videos and websites related to diagnosis, education, community living, emotional supports and more. They also offer parent connections and support via support groups through the county parent liaison program and parent training. CSHCN also offers the Wisconsin First Step Hotline, which is a 24-hour confidential information and referral service. This hotline can be reached at (800) 642-7837.
Wisconsin Healthy & Ready to Work A Series of Materials Supporting Youth with Special Health Care Needs Stories of Transitions to the Adult World is a demonstration project that promotes and supports the transition of adolescents with special health care needs from pediatric to adult health care, employment and independence.
The Family Resource Room is a room within the Waisman Center where families visiting the center can access information on developmental disabilities, special health care needs, programs and services.
The Katie Beckett Program is a program that provides Medical Assistance benefits to a category of children with special health needs.
The Parent Training and Advocacy Projects are a collection of several training and support projects that are intended to provide parents, family members and others with information and support to advocate for their needs.
- Parents As Leaders is a leadership training program that is focused on families with children age birth to 3.
- Early Learning Network brings parents and providers together to learn from one another and to advance system changes in early intervention ages birth through 8 years of age.
- Family Action Network is a community training and system change effort that is focused on family support for families with children with developmental disabilities and other special health care needs.
- Community Ties provides case management and community training on challenging behavior.
- Community Training and Consultation provides a variety of training on topics related to developmental disabilities.

Wisconsin Family Assistance Center for Education, Training & Support, Inc. (WI FACETS) is a non-profit organization serving Wisconsin children and adults with disabilities, their families and those who support them. This organization was founded in 1995 by parents who believed that parents are the best advocates for their children. WI FACETS operates the following programs to help parents support and enrich their children's lives.

A new Parent Training and Information Center provides statewide service. A 5-year U.S. Department of Education grant (CFDA 84.328M) funded the Center starting October 1, 2001. The grant supports families and others with training, information and referral, and individual assistance related to children with disabilities and the Individuals with Disabilities Education Act (IDEA).
Community Parent Resource Center serves the City of Milwaukee. Funded since 1998 through U.S. Department of Education grants (CFDA 84.328C), this project supports under-served parents of children with disabilities to become full participants in their child's education.
WIN-MILL Project provides statewide service. This is a four-state project, including Parent Centers in Wisconsin, Indiana, Michigan and Illinois. Funded since 1995 by U.S. Department of Education grants, parents, students and others are trained to train and support other parents and students about the Rehabilitation Act and transition of students with disabilities to post-secondary school and vocational experiences.

Wisconsin: Finding Your Way: A Navigation Guide for Wisconsin Families Who Have Children and Youth with Special Health Care Needs and Disabilities provides individual services and supports to families that include a child with severe disabilities. The guide offers information and help in finding services and maximizing community resources; limited funding to buy needed services and goods that can't be bought through other sources; help in linking families with other families to strengthen natural supports.

Country Listings

United Kingdom

Contact A Family is the only UK-wide charity providing advice, information and support to the parents of all disabled children - no matter their health condition. They also enable parents to get in contact with other families, both on a local and national basis. To learn how this organization can help your family, contact them via e-mail at info@cafamily.org.uk.

Disabled Parents Network offers supportive services for parents with disabilities throughout the United Kingdom. Such services include parental training, information and referral, and information hotlines. They also offer the Disabled Parents Network Helpline, which can be reached at 0870 241-0450.