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.

 

Washington State Discriminates against youth with DD

 

 

 

Our state has passed legislation into law which discriminates against our youth with developmental disabilities who have high

support needs – look at the facts – 42.3 % of the documented cases reviewed for RHC admission were of people 21 and under.

 

Developmental Disabilities Admissions Review Team Data from September 25, 2011 

admissions Review Report

 

 

11 of the 26 documented people who applied for RHC admission between September 2011 and September 2012 were age 21 or under.

 

That is 42.3% of the documented population.  This is clearly different than the story we hear from The Arc and DDD. 

Our young population is in need of these support services and our state is denying them these supports. 

 

 

(This does not include those who requested admission and were denied by their case manager.  This is the first step and if the person insists and specifically requests to have their person reviewed through the admissions review team, then it gets to this point.  We have no measures to know how many, in reality, are denied admission to the RHC and we do not know what the follow up of those people who were told “no” by the case manager is or what became of them.)

Below is an excerpt from a letter that I wrote to the DD Service System Task force on September 5, 2012.  I have outlined some of the issues regarding this discrimination.  The 18 year old in this letter is awaiting an appeals hearing with DDD.  They denied him admission but he is allowed to continue his short term stay until the appeal trial.  He is doing well with the needed supports at Fircrest.

Letter to Washington State Developmental Disabilities Service System Task Force

September 5, 2012

 

 

Age of Clients

I am greatly disturbed by SSB5459 which passed into State Law discrimination against our youth who may need the level of support services only provided in the RHCs.  I can find no mention of limiting support services by age in either the US DD Act or the 1999 US Supreme Court Decision Olmstead which would support such discrimination.

In regards to the Federal Home and Community Based Service Waivers, these are set up to allow for choice to not live in an institution and to promote community care.  The states may have choices to limit waivers to certain groups or populations but I do not see information from CMS which allows a state to deny those under 21 the supports services needed in the ICF/ID or that the ICF/ID has a federal age requirement for admission.  (See attached document regarding ICF/ID services) When there are no community alternatives for one under 21 who may need these support services and the person is denied long term admission to the RHC, where is this person supposed to go?  The issue is not if these services are available, they are – the issue is denying these services to those under 21 only due to the fact of this person’s age.

Former Secretary of the Department of Social and Health Services, Susan Dreyfus, responded to my question regarding this issue with “they still have a choice – they can send their child out of state.”  Why, when we have the appropriate services right here in our state would we choose to send our children to other states to receive the same service?

Below are some excerpts from the HCBS Waiver applications and contracts which refer to choice.  These individuals have been assessed to have the level of care support needs of the RHC but are not given the choice to utilize those services.

Currently, I am working with a family who has an 18 year old boy at Fircrest.  They family has requested that he receive long term placement at Fircrest given his intense support care needs and having no safe alternative in a community setting for him.  He had been on the CIIBS waiver until his recent short term admission for crisis care at Fircrest. The family has looked at over 8 community placements and with each setting there would be significant problems regarding safety for this individual. These issues range from close proximity to busy streets (this boy has a history of elopement and is very fast and strong) to high staffing turnover (up to rates of 49% in community residential homes) which would significantly put this young man at risk given the fact that he is non-verbal, aggressive, has PICA, does not sleep through the night and has to be moving constantly.

Since being on a short term stay at Fircrest, this boy has improved with his sleep patterns and behavior and has met the short term goals.  The reason he has met these goals is because he has the support staff that he needs to be successful at Fircrest.  This issue of support needs is often misunderstood.  This does not mean that now this boy is “cured” and he can return to his old environment and he will maintain the skills that he has accomplished at Fircrest.  This means that in order to be successful, he needs to have these supports in place.  Without these supports his life is at risk.

I would really like to emphasize this fact of support needs.  These individuals are not individuals who will learn a skill then go on their way.  These are individuals who will need to have these supports throughout their lives.  It is the level of supports which are stable and sustainable that enables these individuals to be successful and contributing members of our community.  Removing these supports puts their lives at risk.

Please take into consideration these issues when looking at the DD System of supports and the role of the RHC in that system.  I believe that the RHC is a critical part of the continuum of care service model which is a model that can best serve ALL citizens with developmental and intellectual disabilities.

Please see the link below for more information on this issue.

 

Washington State Discriminates against youth

 

Are you afraid you are going to lose services? You already have!!

We have all lost a great deal of services and are at risk of loosing more.

If our state continues along the route it is going, with the human experiment of using our most vulnerable citizens as subjects who have not even consented to being involved,  by evicting them from their homes and moving them into more restrictive environments in a different community – we  ALL Lose.

This has been said to be a cost saving measure – it has now been proven and acknowledged that this will not save any money  but will in fact cost more.  How then, if this experiment is more costly than the services these folks have and are happy and satisfied with,  why then, are Senator Adam Kline and others continuing down this path?  Are they too proud to admit they may have made a mistake?  They say they care about our citizens, they say they are concerned about those without any services.  Their actions do not support what they say.

It is really time to eat that pride and stop this process before more people are hurt and more people lose services or go into crisis.   It’s not too late for most.

Unfortunately, it is too late for those 21 and under.  

Our state has taken away a life-saving choice for our children which some of you may need in the future.  Regardless of what is happening now with your child, there may come a time in your child’s life in which you may need to consider out of home placement for his/her safety and health.  This is not an easy choice to make at any time but sometimes it’s the best choice.

Right now there are several children 21 and under who have stabilized in the Residential Habilitation Center  (RHC)because they now have the support they require to stay safe.  These families have requested admission but our state is denying them admission to this life sustaining support system only for the fact that they are under 21.  There are no alternatives for these families and they now have to fight and hire lawyers so that their children may remain safe.  DSHS continues to deny admission.

Please, for the sake of all, write to your legislator, the DD Service System Task Force (address below) and ask them to repeal SSB5459 which prohibited those under 21 from accessing these services.  Also, write to tell them that you support a continuum of care which includes the RHC – regardless if you ever think that you will need it – because it is the safety net for all of us.

As a parent, being told that there is no place in our community which can care for your child and for you to call the police if there is a crisis is not something that any parent, particularly a parent of a young teen with a developmental disability, wants to hear – yet this is happening and has been happening because our state has taken away the freedom of choice as guaranteed in the US DD Act and the US Supreme Court Decision of Olmstead.

We need to preserve these choices so that all people can have a safe environment in which to live.  Even if this is not the choice that you would make, it is a choice that many families do make because they know it is the least restrictive environment for their child and a community in which their child can be safe, supported and participate in life to their fullest.

 

You can write to the DD Service System Task Force via Brittany Yunker – her email is Brittany.Yunker@leg.wa.gov

 

Or visit the Website for the Task Force at:

http://www.leg.wa.gov/JointCommittees/DDSSTF/Pages/default.aspx