Q&A: Chris’ story

Meet longtime Grants Pass resident Sheri Morin. Her 25-year old son Chris relies on in-home supports while Sheri and her husband are at work. Sheri explains what those services mean for their family and Chris’ opportunities to participate in his community.

Legislation in Congress to replace the ACA threatens Medicaid programs. The bill would repeal the Community First Choice Option, a Medicaid program that was established under the ACA. This option provides funding to states to cover home- and community-based supports that allow people to live at home and with their families.

How long have you lived in Grants Pass?
We’ve lived in Grants Pass for 27 years.

Chris smiling next to a large My Little Pony. Can you tell us a little about Chris?

My son Chris is 25 years old. Chris is a nice guy. He’s very high functioning. With supports, he can shower and dress himself, and warm stuff up in the microwave.

He suffered brain damage during birth. He was initially diagnosed with cerebral palsy, a blanket diagnosis. He takes two medications twice a day for seizures. He has diminished cognitive ability and trouble with his speech. He’s also on the Asperger/Autism spectrum, so socializing is difficult for him.

Which services and supports does Chris rely on through Medicaid?

Chris is on the Oregon Health Plan, which covers 100 percent of everything that he needs. At age 21, he became eligible for a certain number of in-home supports hours every week. And he does need support. Those services have meant that someone could make sure that Chris showers, eats and is healthy. Chris’ father and I both work full-time. We need someone to be with Chris in the morning and afternoons.

At the end of last year, the State cut back his support hours, so we’ve backpedaled as far as his independence goes. Last week was his first week without someone coming to the house. I call Chris in the afternoon from work. His dad can occasionally come home from work to have lunch with him.

I don’t know how we would survive financially if his benefits were decreased or taken away.

What are your hopes and dreams for Chris?
We’d like to get him his own place. But we can’t do that without supports. My goal to get him out in the community and figure out what he could do even in terms of a part-time job, so he could support himself a little bit.

What do you worry about if Chris is left alone at home?

Chris is one of the lucky ones. He is very high functioning, but he has seizures. His dad and I could be at work and he could have a grand mal and be lying on the floor by himself. I worry about that kind of stuff, but I can’t quit my job because we have a mortgage to pay and need to put food on the table.

It’s very disconcerting when this all comes down to numbers on a piece of paper. We’re more than that. We’re living, breathing human beings.

If in-home services were eliminated, what could happen?

People like Chris could be warehoused in an institution. We could go back to where we were when Fairview was open. It would be gut-wrenching. As a parent, it would be the ultimate heartbreak to be unable to provide the care and support that my child needs.

My fear is, if something were to happen to myself or my husband, that Chris would have no one to care for him.

Dealing with the unknown is difficult. I’m nervous about what the future holds for him.

Let your federal representatives know how the Oregon Health Plan helps you. You can reach them at 202-224-3121 or use this link to find their mailing or email adddress. Make it clear that Medicaid caps and cuts will hurt people with disabilities.

 

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