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Life Disparities for Adults Living with Disabilities and their Families

  • Published: 2010-11-05 (Revised/Updated 2016-03-25) : Author: Easter Seals
  • Synopsis: Parents of adult children with disabilities have far greater levels of concern about their childs future than parents of adult children without disabilities.

Quote: "Given parents' stress levels and daily caregiving demands, it's no wonder so few have been able to take steps to prepare for their adult child's future..."

Main Document

Easter Seals Study Reveals Notable Disparities Across Every Aspect of Life for Adults Living with Disabilities and their Families - Parents of adult children with disabilities have far greater levels of concern about their child's future than parents of adult children without disabilities - especially around finances, quality of life and employment.

Parents of adult children with developmental disabilities are struggling with extreme concerns that impact every aspect of their lives, especially when it comes to their financial well-being. They are particularly fearful about what will happen to their son or daughter with a disability after they die, yet have done little to prepare for that time, according to a new study released today by Easter Seals via a webcast featuring actor Joe Mantegna, who is also the father of a young adult daughter with autism. The study was made possible by Massachusetts Mutual Life Insurance Company (MassMutual) and conducted online by Harris Interactive.*

"After age 21, young adults with disabilities 'age out' of the services and supports provided by law through the school system. Whatever help families living with disabilities may have received through childhood simply goes away," says Patricia Wright, Ph.D., MPH, Easter Seals national director autism services. "Families are met with harsh realities about their adult child's immediate needs for employment, housing, independence, transportation, social interactions, recreation, healthcare, and financial security."

Through Parents' Eyes: Huge Disparities

Easter Seals Living with Disabilities Study provides insight into the challenges facing adults with developmental disabilities and parents of adult children with disabilities, as compared to parents of adult children without disabilities. In every measure of comparison, the study shows parents of adult children with disabilities had significantly higher levels of concern for their children than parents of adults without disabilities.

There is a consistent, notable gap between the two groups across every aspect of life:

Finances:

Huge gaps exist in parents of adults with disabilities' assessment of their child's ability to manage their own finances (34% vs. 82% parents of adults without disabilities) and have the life skills necessary to live independently (30% vs. 83% parents of adults without disabilities). Seventy-four percent of parents don't see their adult child with a disability as financially independent; while more than half (52%) of parents say their adult children without disabilities are financially independent.

Quality of life:

Just 6 in 10 parents of adult children with a disability rate their child's quality of life as excellent or good (61%), compared to 8 in 10 parents of adults without a disability (82%).

Employment:

Only 11% of parents of adult children with disabilities report their child is employed full time (or 19% part time), while 48% of parents of adults without disabilities report the same (or 24% part time). A little more than a third (39%) of parents say their adult children with disabilities are able to work for pay, compared to nearly all (92%) of parents of adult children without disabilities.

Independent living:

Seven in 10 adults with disabilities (69%) live with their parent(s) or guardian, only 17% live independently - compared to more than half of adult children without disabilities (51%). Furthermore, only 45% of parents strongly agree their adult child with a disability will always have a place to live; whereas, 75% of parents of adult children without a disability strongly agree.

Easter Seals will use the findings to raise awareness of and advocate for the life-long services families desperately need - including school to work transitions, employment support, residential and community support, and financial planning - working to lessen the disparities and bridge the gap for the millions of people living with developmental disabilities.

Preparation for the Future

Yet, given parents many concerns for their adult children with disabilities, nearly one third (32%) have done little to nothing to prepare. At most, these parents may have created a will (41%) and designated a guardian (30%).

"Given parents' stress levels and daily caregiving demands, it's no wonder so few have been able to take steps to prepare for their adult child's future," says John Chandler, senior vice president and chief marketing officer for MassMutual. "Our Special Care Planners across the country are uniquely trained and sensitive to estate planning issues, government benefit programs and regulatory issues, so they are able to help make this part of the parents' struggle a little easier. We want to give families living with disabilities peace-of-mind that their adult children will be okay."

As an Easter Seals corporate partner and the study sponsor, MassMutual is committed to serving people living with disabilities through its exclusive SpecialCareSM program, an innovative solution that gives families with individuals with special needs access to information, specialists, and financial strategies that can help improve their quality of life.

Family Life: We're Stronger Together

"Through the study, parents also shared the many positives of having an adult child with a disability - citing patience, respect, acceptance of others, compassion and new found roles as advocates for people with disabilities as true benefits," adds Wright.

When asked if their life had been negatively or positively impacted by their child's disability, many parents felt raising a child with a disability through adulthood is a balance of the two:

While nearly half (49%) of parents of adult children with disabilities report being negatively impacted by their child's disability, 30% say their quality of life has been positively impacted.

Parents of adult children with disabilities rate their child's quality of life lower (61%) than parents of children without disabilities (82%), but the majority still say it's excellent or good.

Older parents of adult children with disabilities are less likely to rate their child's quality of life as excellent or good than younger parents - age of parents 35-44: 79%; age of parents 45-54: 60%; and age of parents 55+: 58%.

Family cohesiveness is one of the areas most positively impacted by having an adult child with a disability. Parents say having an adult child with a disability has positively effected: the cohesiveness of my family (42%), the relationship with my partner/spouse (32%), and the relationship with my other children (30%). To download the key findings and full report, visit www.easterseals.com.

Methodology*

The Easter Seals Living with Disabilities Study was conducted online within the United States by Harris Interactive on behalf of Easter Seals between August 18, 2010 and September 13, 2010 among 1,714 adults over the age of 18. Of the total, respondents were segmented into one of three separate groups: 390 adults living with a developmental disability, 318 parents of adult children who have developmental disabilities, and 1,006 parents of adult children without disabilities. Using the Harris Poll sample, as well as a sample provided by Easter Seals and other organizations including the Autism Society of America, National Council on Independent Living, American Association of People with Disabilities, and Justice for All, survey participants were queried about daily life, employment, finances, transportation, housing, independence, relationships, recreation, education, and healthcare. No estimates of theoretical sampling error can be calculated; a full methodology is available.

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