Resources: Intellectual/Developmental Disabilities

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 of the United States

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.

Consortium for Citizens with Disabilities

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.

The Council on Quality and Leadership

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.

International Association for the Scientific Study of Intellectual Disabilities

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.

National Organization on Fetal Alcohol Syndrome

TASH

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.

American Association on Intellectual and Developmental Disabilities

AAIDD promotes policies, sound research, effective practices, and universal human rights for people with intellectual and developmental disabilities

The Special Needs Alliance 

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

The Arc of New Jersey

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.

New Jersey Council on Developmental Disabilities

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 New Jersey Regional Family Support Councils

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 on Developmental Disabilities

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.

Alliance for the Betterment of Citizens with Disabilities

Association for Children of New Jersey

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.

Disability Rights New Jersey

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

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.

New Jersey Aging and Disability Resource Connection

ADRC provides information and assistance to older persons, adults with physical disabilities, caregivers and professionals looking for services or programs.

County Disability Services

New Jersey Work Incentive Network Support

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.

Planned Lifetime Assistance Network of New Jersey, Inc.

PLAN/NJ assists in the future care planning of individuals with developmental disabilities and various mental health disabilities in New Jersey

Logisticare Medical Transportation

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

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:

SPAN (Statewide Parent Advocacy Network)

Offers trainings, resources and information to parents and professionals regarding special education.

The Family Support Center of New Jersey

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.

Mom2Mom, 1-877-914-6662

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

New Jersey Department of Children and Families

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.

New Jersey Department of Human Services

New Jersey Division of Developmental Disabilities (DDD)

The state agency responsible for providing supports and services to individuals with I/DD 21 years or older.

Community Care Waiver (CCW)

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.”

Supports Program

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.

New Jersey Division of Disability Services

Offers information and referral assistance as well as publishing the New Jersey Resources Guide for people wit disabilities

New Jersey Division of Vocational Rehabilitation Services (DVRS)

The New Jersey Division of Vocational Rehabilitation Services (DVRS) provides services that enable individuals with disabilities to find jobs or keep their existing jobs.

New Jersey State Legislature

NJ Parent Link

Early childhood, parenting and professional resource center

NJ Helps

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.

 

FEDERAL GOVERNMENT

The Congressional Record and the Federal Register

Federal Bulletin Board

The Internet Law Library

Legislative information from the Library of Congress

Public Laws Online

Social Security Administration

US Census Bureau

US Department of Health and Human Services

US Department of Housing and Urban Development

US House of Representatives

US Senate

The White House

Wrightslaw Special Education Law and Advocacy

***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.sibsnj@gmail.org.