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.
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.