HCBS Transition Meeting Gives State Food For Thought

On Thursday, February 19th, I attended the last public meeting for the HCBS Transition plan, which was held from 10 am to 12 pm in New Brunswick.  I had wanted to testify as Chair of the Elder and Disability Section of the New Jersey State Bar Association about how I thought this plan would affect seniors and the physically disabled.  I was #77 on the list–I never got a chance.  The vast majority of those who testified were parents and loved ones of developmentally disabled individuals, many with autism, who receive waiver services from the Community Care Waiver or the Supports Waiver, and were afraid that their loved one would no longer be allowed to live in their present setting because it was not sufficiently “community based.”  Concerns abounded that loved ones would be shuffled from Starbucks to libraries and malls rather than getting day program assistance, campus-based living or farm-based settings.  Safety was a major concern of many of those testifying.  All of these concerns were important and valid.  I only wished that there were more hours devoted to public meetings so that the elderly, physically disabled and their loved ones could weigh in.

I spend a lot of time thinking about what is a community-based setting and what is a person-centered plan.  I encounter a lot of clients who live in their houses but just aren’t that interested in getting out and walking around, even if they had all the assistance and transportation in the world–they really want to “age in place.”   I deal with a lot of older couples who, despite differences in how much care they need, want to be together no matter what, and look for settings that facilitate that rather than there being one “community spouse” and one “institutionalized spouse”.   Some of my clients just want to sit in their rooms and stew, never engaging in social activities in their assisted living facility or nursing home.  That’s their choice, though I might cajole them in another direction from time to time.

What I wanted to say, had I been able to testify, is that being community-based and person-centered can actually happen anywhere.  If you are a nursing home or assisted living facility with lots of transportation to downtown locations, ability to support family outings, and services and recreation that can be brought into the setting, than I don’t see why you can’t be as much of a community-based setting as anyone getting services in the home.  And that Medicaid services in the home should not isolate people in their homes.  Time must be set aside for paid caregivers to accompany participants on outings, beyond time spent assisting that person with their activities of daily living in the home.

And at the core of person-centered planning, the question must be asked every day, every week, every month:  what do you want to do today?  Who do you want to see?  What do you want to watch or read or listen to?  And how can we make that happen together?

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