Paid employment of mothers and fathers of an adult child with multiple disabilities.
Parents of adults with multiple disabilities lose work hours and mental health, so BCBAs should treat job support as part of behavior support.
01Research in Context
What this study did
The team interviewed moms and dads who have an adult son or daughter with multiple disabilities.
They asked each parent about work history, lost hours, and feelings like stress or guilt.
Then they compared these answers to national data from parents of adults without disabilities.
What they found
Parents of the disabled adults worked fewer hours and quit jobs more often.
They also reported more sadness, worry, and tiredness than the comparison parents.
The problems were equally strong for mothers and for fathers.
How this fits with other research
Ouyang et al. (2014) looked at younger kids and added up dollars. They found the same job loss, plus bigger bills, especially when the child had both autism and seizures.
Blacher et al. (2013) seems to disagree. Latino mothers of younger children with ID kept saying, "My child helps our family grow." The upbeat view clashes with the gloom seen here. Culture and child age explain the gap: hope is easier when the child is young and when cultural values honor family care.
Sivberg (2002) and Busch et al. (2010) used matched groups and got the same bad-news result: more behavior issues and more parent stress. The pattern holds from childhood straight through adulthood.
Why it matters
Your client’s parents may still be working, but they are tired and one crisis away from quitting. Build brief parent breaks into the behavior plan. Offer flexible meeting times. When you write goals, add a line about maintaining parent employment. A stable job is part of client stability.
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02At a glance
03Original abstract
Paid employment is increasingly undertaken by mothers as their children age, with the majority of women being in employment by the time their offspring are adult. Opportunities to engage in employment appear to be reduced for mothers of children with disabilities; however, little is known about the employment of mothers or fathers of adults with disabilities. Data were collected regarding the employment decisions of parents of a young adult with multiple disabilities and contrasted with those of parents whose children were all developing normally. Twenty-five mothers and 12 fathers of a young adult with multiple disabilities were interviewed, as were 25 comparison mothers and 19 comparison fathers. Data collected included hours of work, reasons for employment status, attitudes towards work and child care, and psychological well-being. Clear differences were found between the two groups. Mothers and fathers of a child with multiple disabilities showed different engagement patterns with the paid workforce from comparison parents. Hours of work for fathers of a young adult with multiple disabilities showed a bi-modal distribution, with some fathers working fewer hours than usual and others working very long hours. For mothers in both groups, the number of hours in paid employment was negatively associated with reports of psychological problems. Increased attention needs to be given to the employment opportunities of parents of children with disabilities since employment appears to play a protective role for mothers, in particular. Services provided to adults with disabilities will need to change if parents are to have the same life chances as parents without adult offspring with a disability.
Journal of intellectual disability research : JIDR, 2002 · doi:10.1046/j.1365-2788.2002.00383.x