Parent Resources for ID

Parent Resources for ID

Resources for Parents of Children in Intellectual Disabilities

When a child suffers an intellectual deficiency, parents are often at a loss for how to best support their son or daughter's social, cognitive, and vocational education and performance. Schools are usually thought of first for support. However, many lack the special education programming and resources to prevent a child from falling behind his or her peers in their intellectual development and other fundamental living skills. There are a number of public and governmental organizations that can help bridge these gaps between children with intellectual disabilities and their normally functioning peers (Hasman & Zafron, 2010).

Best Buddies. Web: www.bestbuddies.org

Best Buddies International works in partnership with a dedicated network of volunteers to create social, vocational and developmental opportunities for youth with intellectual and developmental disabilities (IDD). Eight formal programs are offered through various state chapters - Best Buddies Middle Schools, High Schools and Colleges, Best Buddies Citizens, e-Buddies, Best Buddies Jobs, Best Buddies Ambassadors and Best Buddies Promoters. Over 400,000 young people will benefit from their services in 2013. This organization helps parents help their children with ID develop job skills, gain exposure to social support, prepare for employment and create personal friendships.

2. Elwyn. Web: http://www.elwyn.org

Elwyn offers programs to support the intellectual, developmental and behavioral challenges for children and young adults. Their programs include those for mental illness sufferers, the blind and deaf, and those in need of special treatment and health services. Educational programs are available for children aged pre-K through 21 years and center on lessons that promote independent learning and self-determination. Transitional and residential options for young adults (primarily on the East Coast) include campus living, community-based homes and apartments, supported living arrangements, in-home supports, life sharing, and respite opportunities. Vocational and employment work programs and services include training facilities, work centers, placement and employment support services and networks under the Social Security Administration's Ticket to Work Program.

3. TASH (Association for Persons with Severe Handicaps). Web: http://www.tash.org

TASH works to integrate people with disabilities into their communities as equal and viable partners. They help individuals on matters related to social justice and desegregation in terms of education, employment and residential options. Parents can look to TASH for support in educational policies and fighting for improvements in special education in their neighborhood schools. They focus on full inclusive education where children learn alongside their peers with adaptive curriculum to prevent intellectual lags in development. TASH also offers social and transitional support through programs that advocate a presumption of competency rather than deficiency, and teach vocational skills that will also be marketable for the youth in the future. They also fight to eliminate segregated work environment and below minimum wage compensation for those with IDD.

4. The Arc of the United States. Web: http://www.thearc.org

The Arc of the United States is best known for its advocacy in support of children with autism, Downs's syndrome, and Fetal Alcohol Syndrome. Through state and local chapters, the group offers support services including information and referral services, education, employment, health care support and consultancy, residential support, family programs and counseling, and recreational programs that help those with IDD improve their quality of life and social opportunities. For parents with older children, the Arc of the United States has established a School to Community Transition Initiative that focuses on employment, post-secondary education opportunities, and independent community living, and all the issues faced during transition after high school.

5. Through the Looking Glass http://www.lookingglass.org

Through the Looking glass is a nationally recognized center for families of children with disabilities or medical issues. Concentrated on the West Coast, they provide both group and one-to-one services for children with disabilities such as Autism, Asperger Syndrome, and Pervasive Developmental Disorder. Developmental services are offered for infants and toddlers through specialists who conduct home visits and offer guidance and parental education. This can help facilitate parenting skills, interaction, and problem solving. They also offer transitional coaching to help make the road to independent living smoother.

6. Center on the Social and Emotional Foundations for Early Learning (CSEFEL). http://csefel.vanderbilt.edu

The Center on the Social and Emotional Foundations for Early Learning (CSEFEL) is focused on promoting the social and emotional development and school readiness of young children. The group is based in Nashville, TN, but also operates a national resource center funded by the Office of Head Start and Child Care Bureau to offer training and materials to parents, communities and caregivers to improve the educational outcomes for children, enhance their social skills for better social and emotional development and prepare them for future employment by preventing challenging behaviors that might limit work options.

7. National Early Childhood Transition Center (NECTC)

http://www.hdi.uky.edu/nectc/NECTC

The National Early Childhood Transition Center (NECTC) examines factors that promote successful transitions between infant/toddler programs, preschool programs, and public school programs for young children with disabilities and their families. The NECTC comes from the U.S. Department of Education, Office of Special Education Programs. Parents can utilize the website to download tips for what to expect at each transition stage and how they can better assist their children, how to talk to teachers so that they are aware and informed of the special education needs of the child, and how to prepare an older child for life beyond primary school.

8. Birth Defect Research for Children, Inc. http://www.birthdefects.org

For parents of those with IDD, the personalized attention at home can be the most important factor in a child's intellectual, social, and transitional development (Nachshen, & Minnes, 2005). The Birth Defect Research for Children association offers parents in-depth background information about specific birth defects such as Autism as well as parent matching to other families of children with similar defects for support (both at a parental level and for peer-to-peer connections for children). Children who make connections this way often create long-term friendships through which they can experience major transitional milestones together (such as grade changes or high school prom). Support groups are also available for social outlets, and are facilitated both online and at the state level.

9. Kids as Self-Advocates. http://www.fvkasa.org

Kids as Self-Advocates focuses on empowering teenage youth with physical, emotional and intellectual disabilities. They operate from the standpoint that youth can make choices and advocate for themselves if they have the information and support they need. Parents can look to this organization to help support their teen son or daughter's social development through peer relationships, educational development through counseling and specialized, supplemental training programs and also transitional skills as important topics including bullying in school and sexuality and relationships are covered.