What families tell us:
- Families need unbiased information and help to make informed decisions about health and education options for children and youth with developmental disabilities;
- Families want assistance navigating complex community resources and finding avenues for parent support;
- Families are not sure how to collaborate and negotiate effectively with health and education planning teams to get the supports and services their child needs;
- Culturally and linguistically families experience isolation because of language barriers and the lack of culturally competent schools, agencies and organizations; and
- Families want a streamlined, single entry point system that offers supports and services based on individual needs.
What the data tells us:
In Virginia, estimates vary on the number of people with developmental disabilities. All estimates indicate that over 110,000 people with disabilities need support to be included in their communities. Among Virginia children ages 10 months to five years, the prevalence of developmental issues is estimated to be 15%-20%.
Nationally, almost five million children and adults have intellectual and developmental disabilities in our country. Only 25% of those people receive formal disability system services. And, of that 25%, between 55% and 75% live at home with their families.
As reported monthly by the U.S. Department of Labor, the employment rate of young adults aged 20-22 with a disability (32%) is half that of their peers without disabilities (64%). Most youth with disabilities work an average of 20-28 hrs/week with 74% reporting an annual income of $25,000 or less.
And, the U.S. Department of Education estimates about 60% of young adults with disabilities enroll in some type of postsecondary education setting:
- 44% enrolled in two year college (less than half completed the degree or certificate program)
- 32% enrolled in vocational, business or technical school (a little more than half completed the program)
- 19% enrolled in four year college (one-third completed the degree or certificate program)
What this tells us:
Parents of children with disabilities or chronic illness need extra support. The parents may feel ashamed, guilty or different from other people because they have a child with disabilities. These feelings can isolate them from their families and friends when they need their support most. Parents may have difficulty dreaming of their child’s future; consequently, they may not hold high expectations that their child can have a career, go to college, or live the life they want in the community.
Parent to Parent support can help families regain their sense of self; identify their child’s gifts and talents; develop high expectations for their child’s future; and navigate and obtain needed services.