Entitlement?

We hear over and over that the Intermediate Care Facility for those with Intellectual Disabilities (ICF/ID) is an entitlement – but what does this mean in real life?

One would think that if something is an entitlement that it would be there for you when you needed those services   Not so with the ICF/ID and in the state of Washington, the ICF/ID is not available to you if you are 21 or under.

Recently I had a conversation with an executive director of an adult family home which is licensed for adults with developmental disabilities.  In talking about the experience that our family  went through in order to have our son admitted to the ICF/ID for lifesaving care,  this person was horrified.

She had heard that the ICF/ID was an entitlement and was very confused by our story.  She had no idea of the struggles and crises that most families and individuals have survived in order to be lucky enough to utilize this “entitlement.”  She then stated that she needed to hear these stories because she had believed that the ICF/ID was an entitlement not realizing that it is really far from that in real life stories.

Listen to the stories of families who are the survivors.  Of the many, many families that I have had contact with and of the stories I have heard, not one has had the ICF/ID offered to them as an entitlement.

In fact, after a long meeting with my son’s case-manager and the Children’s manager for the Division of Developmental Disabilities to discuss discharge planning from one of his many prolonged hospitalizations, I overheard the DDD manager say “Don’t offer them anything!” as I left the meeting.

What they did offer was for us to call 911 for his next crisis since the Regional Service Network Administrator had indicated that he would not approve another admission for our son since “he was not improving with treatment.” Doesn’t that mean that he needs more help and maybe ought to be able to take advantage of his “entitlement?” DDD didn’t think so.

Obviously with respect to the ICF/ID, the definition of “entitlement” is different and does not mean a guarantee of access to benefits based on established rights. It seems to mean fight until you are almost dead, endure abuse, be jailed, or many other horrible scenarios before you may be “entitled” to access appropriate care in the ICF/ID.

People need to know the stories of our survivors.  Please share yours.

 

3 comments on “Entitlement?

  1. Carole L. Sherman says:

    Cheryl, Thank you.

    Carole

    Sent from my iPad

    Like

  2. Don Weikle says:

    It is not an entitlement. ICF/DD is a Medicaid program. Medicaid programs are administered through the respective states. There is no law that requires them to participate, and if they do, there is no requirement for them to fund ICF/DD’s. The Center for Medicaid Services is presently promoting the closure of ICF/DD’s operated as group homes and converting them to waiver-based community living programs. Many of us do not see this as a positive trend, but that is the reality of what is happening. Major advocacy groups like the Arc are championing this strategy as are groups such as TASH. On the work front, the Federal Department of Justice and Federal Department of Labor have taken positions supporting the plaintiff’s in Oregon using the Olmstead decision as the basis for arguing that sheltered workshops violate client rights, and there is legislation introduced in Congress to end the Department of Labor certificates that allow sheltered workshops to operate. Effective organized advocacy on behalf of those individuals with intellectual disabilities who wish to choose congregate or facility-based services for all practical purposes does not exist. People have assumed that because ICF/DD congregate facilities either in the form of larger institutions or group homes have existed for decades meant they would always exist are finding that not to be the case. And they are finding out that, as many kept trying to tell them, they are not an entitlement.

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