“Quality of life” is a phrase we don’t hear much anymore, but most everyone tries to achieve it in some shape or form. It’s rather subjective.
Our 36-year-old daughter Andrea, for example, has difficulty speaking and uses a wheelchair. Doctors said she likely has Joubert Syndrome, an autosomal recessive genetic disorder with characteristics similar to cerebral palsy.
Andrea lives in a group home, does activities with a day program, works part-time in a warehouse, volunteers and participates in a variety of social and recreational activities. She smiles easily, readily expresses herself and uses an iPad to communicate.
When Andrea and I are together in public, it’s not unusual for someone to ask me a question that’s directed at Andrea. I suggest they ask her directly. People not familiar with folks with disabilities might feel sorry for her, or think Andrea lacks intelligence because of her speech.
They may even be thankful that they or their family members don’t have these limitations. They might perceive that her quality of life is lacking. If you asked Andrea, she would say her quality of life is “totally awesome.”
More to life than the basics
Minnesota and the federal government provide food, clothing, shelter and a safe environment for people with disabilities. For most of us, there is much more to life than those basics.
Every person has a need to wake up in the morning and look forward to the day’s opportunities, build on relationships, and maybe even create something new. Family, friends and direct support professionals (DSPs) are meeting those needs for personal growth for Andrea and her peers.
DSPs provide relief for families caring for a loved one with disabilities. They also help these individuals to achieve more in terms of employment, life enrichment and social interaction. DSPs face increasing paperwork and regulations, lagging pay and benefits and higher turnover than most industries. Unfortunately, the DSP has few advocates in the public debate over how we spend tax dollars.
Comparison: caring for an aging parent
Why should society be concerned? The closest comparison I can make is to people who are caring for an aging parent. They want to maintain a reasonable quality of life for their loved one, and often need help to do it.
Most parents of adults with disabilities recognize that day program, job placement and group home staff serve as an extension of our own families. I value the care they provide and their focus on Andrea’s interests, strengths and goals.
We have formed lifelong friendships with staff at an Eden Prairie-based disability service provider, where I also serve on the board of directors. They are trusted, committed and reliable, so much so that we have chosen a current and a former staff member to serve as co-guardians for Andrea when we pass on.
My husband and I didn’t plan on raising a child with developmental disabilities. The challenges have been many, but the joy and enrichment Andrea has brought to our lives is immeasurable. It’s reassuring to know that with assistance from supportive DSPs, Andrea will continue to experience opportunities for personal growth and life-enriching adventures.
Cut in services directly affects DSPs
There was a 7 percent state cut this year to services for people with disabilities that directly affects DSPs. A bipartisan fix was agreed to by the Legislature and subsequently vetoed by the governor for unrelated reasons.
When the subject comes up again in 2019, I would urge parents to think about their own loved ones and the quality of life they would like for them.
It’s a worthwhile conversation to have, as we support families and their care efforts.
Michelle Veith lives in Eden Prairie.
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