The following list of resources was developed to help siblings, families, and individuals with disabilities. We do not endorse the activities of every organization on this list, nor are we affiliated with every organization on this last; rather, this serves as a resource for families to easily find out about resources available to them at the local, state, and federal levels.
NATIONAL DISABILITY-RELATED WEBSITES
The Arc is the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families. It has more than 140,000 members and nearly 700 state and local chapters nationwide.
The Consortium for Citizens with Disabilities is a coalition of approximately 100 national disability organizations working together to advocate for national public policy that ensures the self determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society.
CQL works with human service organizations and systems to define, measure and improve the quality of life of all people. It offers consultation, accreditation, training and certification services to organizations and systems.
The International Association for the Scientific Study of Intellectual and Developmental Disabilities is the first and only world-wide group dedicated to the scientific study of intellectual disability.
TASH advocates for human rights and inclusion for people with significant disabilities and support needs – those most vulnerable to segregation, abuse, neglect and institutionalization.
Disability Specific Organizations
Search for your loved ones diagnose on the internet and you will most likely find a national organization that can offer a wide variety of services and advocacy resources. Below are some examples.
- Autism Society of America
- National Down Syndrome Society
- National Fragile X Foundation
- United Cerebral Palsy
AAIDD promotes policies, sound research, effective practices, and universal human rights for people with intellectual and developmental disabilities
The Special Needs Alliance is a national, non-profit organization committed to helping individuals with disabilities, their families and the professionals who serve them.
NEW JERSEY DISABILITY-RELATED SITES
NJ’s largest organization advocating for and serving citizens with intellectual and developmental disabilities, and their families. The Arc of New Jersey is an affiliated chapter of the national organization The Arc (www.thearc.org). Community-based services are available statewide through The Arc’s network of Local County Chapters.
The Council provides a platform for agencies, together with consumers, family members, and advocates, to develop a coordinated social policy. The Council commissions research on policy issues and funds model programs. The Council also funds projects to educate and inform decision-makers, legislators, and the general public about developmental disabilities.
The Regional Family Support Planning Councils (RFSPCs) provide family members of people with intellectual and developmental disabilities (I/DD) the opportunity to exchange knowledge and information. Family members come together to advocate about family support issues at the local and state level. Councils also collaborate with the Department of Children and Families (DCF) and the Division of Developmental Disabilities (DDD), as well as other state agencies, on ways to better serve individuals with I/DD and their families.
The Boggs Center provides community and student training and technical assistance, conducts research and model demonstrations, and disseminates information and educational materials. Activities of The Boggs Center are guided by its Consumer Advisory Council and partnerships with people with disabilities, families, state and community agencies, and policy makers.
Advocates for Children of New Jersey (ACNJ) works with local, state and federal leaders to identify and implement changes that will benefit New Jersey’s children.
DRNJ provides information and referral, technical assistance and training, individual and system advocacy, legal and non-legal advocacy, and outreach and education.
The Family Support Coalition of New Jersey is devoted to promoting the development and improvement of Family Support Services for families that are caring at home for a family member with a developmental disability.
ADRC provides information and assistance to older persons, adults with physical disabilities, caregivers and professionals looking for services or programs.
Assists Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) beneficiaries to start, continue or increase work efforts while maintaining benefits for as long as they are needed.
PLAN/NJ assists in the future care planning of individuals with developmental disabilities and various mental health disabilities in New Jersey
If your loved one has Medicaid and needs a non-emergency medical transport such as to a doctor’s appointment, Logisticare will arrange this transportation free to the consumer.
The Family Resource Network meets the need for community-based programs and services to individuals and families with a variety of disabilities through its affiliate organizations:
Offers trainings, resources and information to parents and professionals regarding special education.
Maintains an online calendar of trainings, seminars and workshops throughout the state, covering a variety of topics of interest to families, caregivers and professionals in the developmental disabilities field.
A 24 hour, 7 day a week helpline coordinated by UMDNJ-University Behavioral HealthCare and funded by DCF. The helpline features peer support, telephone assessments, a network of referral services and support groups. In-person support groups are also available
NEW JERSEY GOVERNMENT
DCF is the State Department that serves children with I/DD 21 years old and younger. New Jersey Children System of Care (CSOC) CSOC is the Division within DCF that providers services to children 21 years of age and younger with I/DD.
PerformCare, (877) 652-7624
Single point of entry into the CSOC. DCF contracts with PerformCare to administer and refer the services provided by CSOC. PerformCare is your 24/7 point of contact to assist in coordinating care for your child.
The state agency responsible for providing supports and services to individuals with I/DD 21 years or older.
The Medicaid Community Care Waiver (CCW) pays for the services and supports individuals with I/DD need to live in the community. DDD maintains the waiting list for this waiver. Many families know the CCW as the “waiting list for residential placement.”
DDD will launch its new Medicaid Waiver program called Supports Program soon. It will provide needed supports and services to adults, 21 and older, living with their families or in their own unlicensed home. It will provide all enrolled participants with a budget that will be based on their assessed level of need. Individuals can then purchase individual and family support services (such as respite, camp, and assistive technology, etc.) on a fee-for-service basis using that budget. This budget will not include the individual’s employment and day services, which will be separately budgeted, also based on need. Participates will also have a Support Coordinator instead of a case manager.
Offers information and referral assistance as well as publishing the New Jersey Resources Guide for people wit disabilities
The New Jersey Division of Vocational Rehabilitation Services (DVRS) provides services that enable individuals with disabilities to find jobs or keep their existing jobs.
Early childhood, parenting and professional resource center
The NJ Helps Services Home Page is designed to give consumers a “one-stop” shopping resource for the wide range of programs, information and services provided by the Department of Human Services and its partners, to assist individuals, families and communities in throughout the State of New Jersey.
Catastrophic Illness in Children Relief Fund, 1-800-335-3863
The Catastrophic Illness in Children Relief Fund is a financial assistance program for New Jersey families whose children have an illness or condition otherwise uncovered by insurance, state or federal programs.
***SIBS NJ welcome suggestions of internet resources not listed here that may contain information of benefit to individuals with intellectual and developmental disabilities and mental health needs, their families or professionals in the field. If you would like to suggest a resource please email Cheryl Crick at Cheryl.firstname.lastname@example.org.