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Most of us take everyday adult life for granted; we have a place to live, access to transportation and the opportunity to live independently. The same can most likely be said for those of us with adult children. The basics are covered. But what happens if you’re one of the millions of adults living with a developmental disability in this country? What if you’re the parent and caregiver to an adult child with a disability? How is your life different? Are the basics covered?
When people with disabilities turn 21, they and their families are no longer eligible for the services and supports provided by law through the school system. To determine how this affects them, Easter Seals — the nonprofit, community-based health agency dedicated to helping children and adults with disabilities attain greater independence — commissioned Harris Interactive to perform an online poll of adults with disabilities and their parents . The primary goals of the study were to call attention to the challenges these people face, help service providers better respond to their needs, and heighten awareness of the needs of adults living with disabilities and their families.
The survey was conducted online between August 18 and September 13, 2010. There were 1,714 total respondents (18 years old or older) that were segmented into one of three groups: 390 adults with disabilities who developed their disability before turning 22; 318 parents of adults with disabilities; and 1006 parents of adults without disabilities. Disabilities included an injury due to an accident, Down syndrome, Osteogenesis imperfect, Asperger’s disorder, epilepsy, pervasive developmental disorder-not otherwise specified, autism/autistic disorder, fetal alcohol effect or fetal alcohol syndrome, psychiatric disabilities, blindness/vision loss, fragile X syndrome, Rett’s disorder, cerebral palsy, intellectual disabilities, spina bifida, childhood disintegrative disorder, muscular dystrophy, traumatic brain injury, and deafness/hardness of hearing. The participants spanned educational levels, employment status, racial backgrounds and income levels.
The parents who responded on behalf of their adult children with disabilities did so primarily because those children did not have the cognitive abilities to complete the survey themselves. Sixty two percent — almost two thirds — of those disabled children had an autism spectrum disorder, including Asperger’s disorder, pervasive developmental disorder-not otherwise specified and Rett’s disorder. The parents reported that their adult children were generally unable to live independently. They were less likely than non-disabled adults to have a bank account, health insurance, cell phone, personal computer, credit card or MP3 player. They were less likely to have a spouse or partner, or to live alone. Indeed, seventy percent of disabled adults live with a parent. Although some adults with disabilities work (30%) or go to school (29%), almost half (43%) stay home all day.
Although more than half of these adults got early intervention and/or attended special education classes, their parents did not feel that these measures prepared them to live independently or have gainful employment. Only 27% of parents reported being confident that they themselves were able to prepare their disabled child for adult life, as opposed to 62% of parents of nondisabled adults.
Parents are understandably concerned about what will become of their children when they die. They help their children financially, they help them with transportation, they help them shop and prepare meals. Sixty percent have discussed what will happen when they die with their other children, and in thirty-six percent of cases other children in the family are planning to take care of their sibling with a disability. But almost one-third of parents that have adult children with disabilities (31%) do not know who will take over when they can no longer provide care.
Adults with disabilities who were able to answer the survey for themselves painted a much rosier picture. In contrast to people whose parents took the survey for them, only 18% of this group had some form of autism. More of their disabilities were due to accidents (19%), psychiatric disabilities (11%) or cerebral palsy (10%). This is a highly educated group; 43% of them have graduate degrees. They are independent by all measures taken, with bank accounts, cell phones, spouses and the like, and they rate their quality of life as high. Yet 42% are unemployed — a much higher rate than the national average. And almost half (48%) admit that their disability has had a negative impact on their lives and the lives of their family members.
The mean age of all of the respondents was 50 – 55 years. So the parents were thinking of their twenty-something children, while the adults with disabilities (generally about 25 years older than the adult children upon which the parents’ answers are based) were thinking about their own lives. Thus, there is likely a generational bias in the different answers given.
Easter Seals is a leading non-profit provider of services for people with special needs. The organization has been helping individuals with disabilities and special needs, and their families, live better lives for nearly 90 years. From child development centers to physical rehabilitation and job training for people with disabilities, the organization offers a variety of services to help people with disabilities address life’s challenges and achieve personal goals.
Easter Seals is using key findings from this study to help raise awareness of the life-long services families desperately need and advocate for people with disabilities and their families. To find a full version of the study, and help support people with disabilities, visit www.easterseals.com.
- Easter Seals Living with Disabilities Study. Easter Seals. Accessed 2010 Dec 10.