As family members and caregivers navigate the human services and regulatory environment, the information resources presented may assist in addressing a loved one’s needs throughout their life.
Websites that may prove helpful include:
American Association on Intellectual and Developmental Disabilities (AAIDD)
The AAIDD is an advocacy group that promotes policies, research, best practices and human rights for children and adults with intellectual and developmental disabilities.
The ARC of the United States
A national advocacy group (with local chapters) that protects and promotes the human rights of people with intellectual and developmental disabilities and actively supports their inclusion in the community.
- Association for Behavior Analysis International (ABAI) The Association for Behavior Analysis International is a nonprofit membership organization that focuses on contributing to the growth and vitality of the science of behavior analysis through research, education, and practice.
Association for Science in Autism Treatment (ASAT)
ASAT is a not-for-profit organization of parents and professionals committed to improving the education, treatment, and care of people with autism.
The Asperger and Autism Alliance for Greater Philadelphia. A support community of families, caregivers, individuals with autism, educators and professionals.
Autism New Jersey
Autism NJ is a nonprofit agency that provides information and advocacy, services, family and professional education and consultation. The organization offers families, professionals, government officials and other interested parties assistance, guidance and training on a regular basis.
Autism Speaks brings the autism community together as one voice to urge both the public and private sections to take action against this international health crisis. Autism Speaks offers a guide, The First 100 Days, to parents whose child has recently been diagnosed with autism.
Autism Society of America, Greater Philadelphia Chapter
The Greater Philadelphia Chapter of the Autism Society of America was established in 1977 and serves Bucks, Chester, Delaware, Montgomery and Philadelphia counties.
Autism Watch provides a scientific perspective and overview on a range of autism topics. Scientific analysis of autism therapies is offered.
Pennsylvania’s autism-friendly business and service directory that provides resources for autism, Asperger Syndrome and Pervasive Development Disorder- Not Otherwise Specified (PDD-NOS) to families and communities throughout the state.
Cambridge Center for Behavioral Studies
The Cambridge Center for Behavioral Studies is a nonprofit organization that harnesses the expertise of hundreds of behavioral scientists to solve problems in the home, school, community, and the workplace.
CAR-The Center for Autism Research
CAR is a collaborative effort between The Children’s Hospital of Philadelphia and the University of Pennsylvania. CAR’s goals are to identity the causes of autism spectrum disorders (ASD) and develop effective treatments. CAR also conducts research studies for infants at risk for being diagnosed with ASD (due to having a sibling already diagnosed) as well as toddlers, school aged-children and adults on the autism spectrum.
Centers for Disease Control and Prevention
This website includes a page focusing on the work of the National Center for Birth Defects and Developmental Disabilities. The site offers information on newborn screenings, child development and parenting issues and developmental disability topics.
Department of Behavioral Health and Mental Retardation Services
The Department of Behavioral Health and Metal Retardation Services (DBH/MRS) is responsible for planning, monitoring and coordinating services for Philadelphia residents with an intellectual or developmental disability. The Directory of Services and Supports is a good background resource for Philadelphia residents and others in the region.
Educational Law Center
A non-profit legal advocacy and educational organization dedicated to ensuring that children in Pennsylvania have access to a quality public education. The website offers publications and other information that can assist a family in securing an appropriate special education program for their child.
HUNE is a not-for-profit organization established in 1998 that provides free bilingual English and Spanish training, technical assistance and individual assistance to parents of infants, toddlers, children and youth with disabilities and the professionals who support them.
Institute on Disabilities
The Institute on Disabilities supplies technical assistance to the Pennsylvania Training Partnership for People with Disabilities and Families. The Institute serves in strong support to the Partnership ensuring that the state-wide trainings offered to people with developmental disabilities, their family members and professionals are comprehensive and consistent.
National Down Syndrome Society
The mission of the National Down Syndrome Society is to advocate for the value, acceptance and inclusion of people with Down Syndrome. The My Great Story feature on the website presents a unique profile of individuals with Down Syndrome engaged in a full range of activities in their communities.
OAR- The Organization for Autism Research
OAR was created in 2001 and focuses solely on applied research. The organization, and its work, is a resource for family members, clinical and educational professionals, and others who are either directly or indirectly impacted by autism.
PAR- Pennsylvania Association of Resources
PAR is the member organization for providers of autism and intellectual and developmental disabilities services in Pennsylvania. The site offers contact information for service providers, resources available in Pennsylvania, legislative initiatives that may impact children and adults with autism and other developmental and intellectual disabilities and advocacy strategies.
Pennsylvania Bureau of Autism
The Bureau of Autism Services is an agency within the Pennsylvania Department of Public Welfare. The site can be a resource for information relating to insurance issues, training, behavioral health services, the adult autism waiver program, mini-grant opportunities and available speakers. The Bureau of Autism Services also offers a Virtual Training and Resource Center for professionals and families.
PaTTAN- Pennsylvania Department of Technical Assistance and Training Network
PaTTAN is an initiative of the Pennsylvania Department of Technical Assistance and Training Network and offers a full range of training courses for parents and professionals. The site includes a toll-free help line to assist parents with questions relating to their children’s special education program.
Wrightslaw is a site that offers user-friendly publications relating to special education law and advocacy. It also offers a free online newsletter on special education topics.
Note: Melmark is not responsible for the information/content presented on other websites that may be linked from this page. Information presented on those sites does not necessarily represent Melmark’s support or endorsement of the material presented. Melmark does not endorse nor recommend a specific professional, organization or treatment model that is not scientifically validated or evidence based. For specific details relating to the information presented, please contact the organization cited.