Who really is accountable?

Recently I have been involved in advocating for a young woman to have admission to the Intermediate Care Facility (ICF).  She was on a respite stay at an ICF recently due to an issue in the private home she had been living in – one to which she could not return.  During this respite stay she requested admission to the ICF near her home and family. Admission was “denied” and her guardian was told if she stayed in the ICF for 90 days, she would be eligible for the Roads to Community Living grant and could find a home in a supported living arrangement.

The young woman went home with her mother for transition to supported living.  The problem was that there were no supported living homes available.  Only one agency thought they could accommodate this young woman’s needs and promised much more than they could deliver.  During this “transition” time, one “promise” after another was broken – from issues of roommates, to appropriate room (it was suggested that the bed set so it was partially in the closet – the only arrangement in which a bed would fit in the room), to unsanitary conditions which could lead to health problems for the residents, to no staff able to take this woman out to her frequent community outings.  This obviously was not a safe placement  – yet it was the only one available.

It was at this point that I ran into this young woman at the grocery store  –  what a coincidence!

In the telling of the story, I asked her guardian about the Planned Action Notice, the required written documentation of decisions made by the Developmental Disabilities Administration – the  first step in asking for an appeal.  Without this written notice, an appeal cannot be initiated.  NO written denial had ever been sent – did the Admission Review Team really meet and did they really deny admission?

The guardian requested a copy of the written documentation (which would have been sent 2 months previously) It did not materialize but what did happen was the guardian received several harassing, abusive and threatening emails from the young woman’s DDA Case Manager.  I am not surprised that the documentation was not there but I was surprised by the written threats and harassment the guardian received.

This scenario is a scenario that many advocates are aware of.  The abuse of the rights of our vulnerable citizens.  Decisions are made without going through the legal process and therefore there is no written documentation of the requests for admissions to the ICF.  We hear that no one is denied and we know this is not true.  The reason that the “official” record says that no one is denied is because these decisions are made in secret, are not documented, the decision is not written down, a Planned Action Notice is not sent and the person has no opportunity to appeal.

 

This is unlawful and violates the legal rights of many of our loved ones.  When will this practice be uncovered and when will the department be accountable for not following their policies and the laws of Washington State, let alone the Federal Government?

Where is the choice? Where is the person-centered care?

The historic Olmstead Decision  “affirmed that the ADA requires states to provide services for people with disabilities in the “”most integrative setting appropriate” and that states are obligated to place people with disabilities in community settings when treatment professionals determine such settings are appropriate, the individuals themselves do not oppose such placement, and the state can reasonable accommodate community placement given its available resources” (Lakin & Stancliffe, 2007) (OLMSTEAD V. L. C. (98-536) 527 U.S. 581 (1999), 1999)

Washington State is practicing way outside these boundaries by passing laws prohibiting supportive community services to those under 21 regardless of the person’s assessed needs which may require intensive supports available ONLY in the supportive community.

Where is the choice?  Where is person centered care?  It is certainly not being practiced in the case before an Administrative Law Judge this week.  Read the case below, read the choices of the family, read the recommendations of the professional experts – all which indicate this 19 year old young man is stable, safe and has adapted well to his home in a supportive community.  Developmental Disabilities Administration (DDA) is continuing to deny long term admission to the chosen community where this 19 year old has lived for over one year.  DDA is using Roads to Community Living and a recent Washington State Law denying him permission to stay in his home while attempting to “build a home around him” in the community.

 

He already has a community where he is safe, stable and one which his family/guardian and care professionals agree is the best option for him in the least restrictive environment for him and one in which he is happy.  Where is the Person-Centered Care in the actions that DDA is taking?

Jack was admitted on “short term stay” in June 2012.  Jack transitioned very well, his medications were adjusted, he has 1:1 support, he has freedom to move about, he attends a local public school, his family is nearby and engaged, and Jack is happy.   Jack’s family has looked at over 10 “community” homes in the area, none of which would provide a safe environment for him.  Administrators in several Supported Living Agencies have told the mother that they would not be able to manage Jack with his needs.  The local Medical Expert in Autism who had managed Jack’s care prior to the short term stay for stabilization wrote that he had “run out of treatment options” for Jack.

When the short term stay was nearing 90 days, Jack’s mother was informed that Jack needed to leave this community.  Jacks mother had already seen there were no safe alternatives for Jack elsewhere and having already run out of treatment options by the experts in the community and fearing for Jack’s safety, she requested that Jack be allowed to be admitted on a long term basis to the supportive community which had served him very well.

Jack was denied.  An “exception to rule” was requested – this was denied.  Jack’s mother requested an administrative hearing.  After the hearing, the Administrative Law Judge stated that she did not know enough about the law to make a decision at that point.  She requested DDA to submit a proposal for supported living for Jack, share with the mother who would then write her comments, concerns and her proposal, which would then all be submitted to the judge.

The Administrative Hearing Manager wrote she objects the submission by Jack’ mother and has requested a post-hearing conference to discuss the Mother’s submissions.

It must be emphasized that Jack’s mother‘s concern is Jack’s SAFETY.  She has made this perfectly clear.  The Administrative Hearing Manager asked Jack’s mother “don’t you think you are asking for too much?’ to which Jack’s mother replied “Is Jack’s safety too much?”

Again, where is the choice?  Where is the Person-Centered Planning?  Where is the common sense? Where is the compassion?

 

To be continued. . .

 

Bibliography

OLMSTEAD V. L. C. (98-536) 527 U.S. 581 (1999), No. 98-536 (Supreme Court of The United States June 22, 1999).

Lakin, K. C., & Stancliffe, R. J. (2007). Residential Supports for Persons with Intellctual and Developmental Disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 151-159.