Choices, integration are working for many, but are threatened

At age 25, our son was presented options about where he could live and work. He chose to live in […]

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At age 25, our son was presented options about where he could live and work. He chose to live in a residential group home with three other gentlemen with disabilities, and 24-hour live-in staff. At about the same time, he chose a nonprofit day training and habilitation program that helped with employment opportunities.

Soon our son will be 40 years of age; he has built a life for 15 years that includes a successful job at a grocery store and safe place to live. This success didn’t just happen, nor will it continue to be successful, if existing providers aren’t involved in his daily activities.

Providers of residential group home programs and day training and habilitation programs are now being called into question, which puts us and tens of thousands of other Minnesota families, at a serious crossroad. The federal government wants more evidence that people with disabilities have a continuum of options that encourage individual choices and community inclusion.

Minnesota must comply and is in a quagmire about how to make improvements. The heavy-handed push toward “integrated” home and work settings feels like a force fit for many. It’s even harder for some people with disabilities who are not capable of coping in a competitive work environment or living on their own without minute-to-minute supports. As much as some would like it to be so, there is no “one size fits all approach.” That was iterated by U.S. District Judge Donovan Frank in approving the Minnesota Olmstead Plan.

In comparison, our son makes many of his own decisions. He is integrated in the community with work and home choices. For 15 years, he has called his housemates “my family” and where he lives, “my home.” At the same time, he needs assistance with planning, prompts and direction. Similar in his work, there’s help with skill development, and the day training and habilitation plays a key role as the liaison to the employer. Our son has autism and physical limitations. He is a vulnerable adult; academically age 12, who cannot perform money management, many living skills, appointments, or transportation. He is not capable of living alone and working alone. I suspect my son’s story sounds like many others.

If these providers change, go away, or get replaced, how will this impact our children? For my son, it will be negative with many setbacks. I suspect others may feel the same way on how this will impact their adult children using these services.

So, what can parents do to protect today’s providers and supports? We must learn, and act.

First, know that the federal government – the Olmstead Plan is good and valid in that it protects people with disabilities to be able to make their own choices about where they live and work.

Secondly, realize that our state’s approach to this federal mandate is the crux of the matter; to change or replace provider models will require substantial funding. Start by understanding how your son or daughter’s daily funding rate may be changing. Your case manager or provider can tell you. These funds pay the providers to support each person’s life and work choices. For many providers, rate cuts are imminent and long term sustainability is questionable.

Third, contact your legislators. They set budgets to fund current programs and services, and any new efforts. Thank them for what is working and help them to understand that rate cuts and adjustments could force providers to close their doors. Share examples of how your son or daughter is included in their community and makes his or her own choices.

And, attend the Best Life Alliance rally at 10 a.m. on Tuesday, March 14th at the capitol in St. Paul. Support improved direct support staff member hiring and competitive wages. Let’s make our voices heard, and help our state decision makers to do the right thing.

Why are the providers changing, being replaced and facing funding cuts instead of having the opportunity to evolve programs that work to be compliant with the federal law? For my son, choice and integration did work and are working.

S. Kenny – Parent White Bear Community

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You are not alone. Minnesota Autism Resource Portal.