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Joan K 
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Re: “Family vs. institutional care in Arkansas

Dear Teresa, Kim and Melissa, my heart goes out to you!! As one who has struggled, believing in community and in caring for our own loved one at home, I too, fought for many years on various fronts for my precious, profoundly challenging grandson.... in school settings when he was a little child, at home, paying thousands out of pocket - when community services in two states offered meager or no services. Today if I were able to keep my 24 year old grandson safely at home I would so. If I could find a community provider that would not only accept my loved one, but also provide adequate staff and safety, he would be in community in a heartbeat.

Each family has it own set of unique, overwhelming challenges, and through the years, weathering many crises, the reality that neither we or our grandson could remain safe in our home, even WITH hiring professional staff oversight, and 2:1 direct care staff so he could enjoy community, we made the difficult choice to have our loved one live elsewhere. I hope that CFCO is your answer. We shall see.

To Mr. Mark George: I would respectfully submit the definition of a "red herring" according the Webster's Dictionary: "Something unimportant that is used to stop people from noticing or thinking about something important."

Choice is important to all of us as parents and guardians; cost is important to the states. Federally funded Protection and Advocacy organizations (and other entities) routinely misrepresent costs when testifying before state legislatures because cost/budget is important to the states. By stating that it "costs taxpayers $115,000 for each person who remains at a (facility - HDC)" provokes an angered response and thoughts of unfairness. Not sure who P & A is "protecting" by stating such lies, but it is certainly not our loved ones.

The truth is that most lower cost, easier to serve individuals have already been moved out of HDCs across the nation over the last twenty years. Higher cost, most difficult to serve individuals remain at HDCs due to their extreme needs, and for aging parents, this is all they have ever known for their child, having no idea how to care for, much less navigate the complex, deficient community system. In our neighboring state, Community PROVIDERS submitted estimates to the state through Legislative Post Audit, clarifying that little or no cost savings would be realized by transferring our most needy individuals to the community.

When one looks at the larger pattern, we see states "copying one another" using strategies such as growing waiting lists, (again, budget/cost savings") while funding other projects. In many states, the waiting lists have been allowed to grow to such intolerable levels that there is a great public outcry, such as yours in Arkansas. The dereliction of duty by states, ignoring the moral obligation to assist in care for our most needy by allowing exorbitant waiting lists to grow over several years, throwing families into crisis, is striking.
Actually, precious, dedicated parents and guardians: - we are all in this together. Although there were several "dislikes" to HappyHomeForKim, what she says is absolutely true; there IS a demand for facility care and it is being denied to families in severe crisis while the deficient community system remains largely unchanged. Because families become exhausted just trying to make it at home with no assistance, there is no time (or desire) to find out what is going on at the other end of things.

There is a breaking point for all of us. For some, we are broken over and over again until we have nothing left to give due to sheer exhaustion. Let's look to align ourselves together, creating greater solidarity, seeing through the lying strategies being used to divide us. Let's, as Teresa Tracy Dodson so eloquently states, continue to fight for our loved ones.

Sincerely and respectfully,
Joan K

4 likes, 0 dislikes
Posted by Joan K on 10/08/2014 at 8:49 AM

Re: “Family vs. institutional care in Arkansas

The loved ones mentioned in this article sound in some ways similar to my profoundly affected grandson with autism. He was raised in community, by us, until we exhausted every possible option. Although my husband and I said he would never go to an institution, we have been amazed and the level of wonderful care and stability brought on by placing him in a facility like the ones mentioned here. It takes a direct care staff ration of 2 to one minimum to handle him.

Benjamin, you stated: "But an HDC is surely not the "most appropriate" setting for someone with long-term care needs that can be addressed in a less restrictive environment or someone who can live with a degree of independence on their own. I think those people should be given access to home/community-based care, especially if it is cheaper."

We live in a state near Arkansas where down-sizing and "our-moded programs of care" are often denigrated. Yet our State's Legislative Post Audit confirmed it was NOT cheaper to serve our grandson and other transition candidates in the community!

We have had community providers refuse to serve our loved one, even though by law they are "required" to do so. Our grandson holds a limited part time job, and recently attended our state fair. He is NOT segregated like he would be in a group home with understaffed, poorly trained, overworked staff paid 8-9 dollars an hour, and where the turnover rate is 60%. Turnover at the facility (HDC) where has lived happily for six years is in the 15% range.

Institutions are the safety net for whom the community has failed. Staffing levels and pay compensation retain dedicated staff at HDCs, where a hierarchy of professionals are available on a campus of homes. Over the last two decades of pervasive down-sizing and closures, community has worked well for many higher functioning individuals. However, in most states, for the most part, only the most fragile, vulnerable and difficult to serve remain at facilities.

I thank God every day for the facility where my non-verbal grandson lives! I dread to think about the fragmented care he would likely receive in community since the community Direct care staff wage has not significantly increased for over a decade, and staff are not motivated to stay long enough to even get to know him.

There have been deaths in overheated car vans, drownings of helpless people who cannot speak, and extensive abuse of the weakest members of our society across the nation in community settings in recent years. If you are interested in doing your own due diligence, you can check out:

http://www.vor.net/images/AbuseandNeglect.pdf!

Additionally, I would be happy to send you Post Audit documentation if you are interested.

Respectfully,
Joan K

4 likes, 4 dislikes
Posted by Joan K on 10/03/2014 at 6:24 PM

 

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