Congregate is not the same as segregate

I am very disappointed with the Joint Position Statement published June 23, 2016 by The American Association on Intellectual and Developmental Disabilities (AAIDD) Association of University Centers on Disabilities (AUCD).

While there is quite a bit of quality information in this statement it is obviously clear that these organizations also have a strong bias against choice of residential settings.  It is unfortunate that these organizations do not understand that congregate care is not the same as segregated care.

“Everyone with an intellectual or developmental disability deserves to live in the community where they have the opportunity to experience vibrant lives that include work, friends, family, and high expectations for community contributions.”  These goals can and are also accomplished in congregate and campus type communities.

Many states have built systems that utilize group homes as a key way to support people in the community. When people find themselves in a situation where they need to live outside of their family home, they are often placed in an “open bed” versus being offered person-centered supports designed specifically to meet their needs. In many of these situations, people remain as isolated in these settings as they do in a large-scale institution. A process for creating and sustaining supports that make their living situation a home in a neighborhood is needed.

It is clear from the above statements that these organizations realize there is a problem with the funding and system that many supports are built around.

Yet AAIDD and AUCD are doing exactly what they chastise others for doing – categorically denying the individual the personal choice for individualized care in the residential setting they choose.  The setting is not what necessarily causes the segregation – separation from familiy, friends and community causes segregation.  Unfortunately that segregation can happen in any residential setting.

It is the segregation that needs to be called out – not the setting.

 

 

Not Just the Next Empty Bed

Recently we moved our son from the intermediate care facility to a home in the community under a supported living arrangement.  It was a difficult decision to make given all the research that I have done regarding care and oversight.  Many people wrote to me telling me of the terrible decision I was making and with horror stories of things that had gone wrong in the community.  I was well aware of many of these issues and still am aware of the lack of choice and quality of care that is offered in many settings.  I am aware of the cost issues and the cost-shifting that occurs making it appear that care in the community setting for those with complex care needs is less than the cost of care in the ICF/ID.

But, there were some circumstances that necessitated this move – a move that we thought we would not be making for a long time – namely that the ICF/ID was not able to provide the prescribed medical and nursing care that my son needed and his health was in danger.  There had been charges of medical/nursing neglect, many medication errors, and other issues related to personal and healthcare concerns.  The ICF/ID healthcare providers refused to follow the prescribed treatments of my son’s medical specialists and I was forbidden to teach nursing or personal care staff how to administer special medications or how to apply his splints correctly.  My hands were tied  due to the inability of the facility to acknowledge problems – not one specific problem but many.  I needed to visit several times a week in order to do his nursing care while at the same time being told that my visits were doing him a disservice.

But, my son had one option in this that most other people do not have – the option of CHOICE.

While on the wait list for the Roads to Community Living grant I was able to try to maintain my son’s health until we were able to choose a home that would work for him.  We had specific criteria – number one being that he needed to remain in our local community, the one in which he grew up and in which the ICF/ID was also in.

Of course, the supported living agency had to choose my son first before he could choose them and that took over a year and probably 8 rejections from local agencies.  When Alpha Supported Living Agency said they could support him, it then took time to hire and train staff and planning for which house would work best for him given the mix of the residents.

One of the major reasons that my son had this choice was due to the fact that he had continued to live in our local community and we involved natural supports to help with his care and community integration. He did not have to take the “next empty bed” as his choice for this move (that was how he got into the ICF/ID to begin with)

We are so thankful for this opportunity and my son’s health has greatly improved since his move and he has blossomed in many other areas too.

It is my assumption that many problems that arise from community residential services is that “the next empty bed” is the only choice available.  This is not a system which supports person-centered choice or real community.

There needs to be changes and more alternatives for true choice – from congregate, campus based care to individual homes – as long as the person is appropriately supported one can have a very meaningful life. Many times this takes much collaboration and team effort and adequate funding to support – but it can be done.

Please check out The Autism Housing Network for and ideas on how to increase choice and alternatives for adults with intellectual disabilities.

Disability Rights Washington has filed a lawsuit against Washington State Department of Social and Health Services and the Washington State Health Care Authority to help speed up transition and provide supports in the community.  My son is a member of this class-action lawsuit although I was not aware of it until it was made public this week.

Letter from DRW to DSHS and HCA

DSHS and HCA response letter

Is Washington State “decades” behind the times?

This has been an interesting week for TV Investigations into issues of care for our citizens with Intellectual Disabilities.

One deserves to be heard and is a real investigation into real and current issues of abuse and death of an innocent man who happened to live with an intellectual disability.  Well, the other report, is not really an investigation – at least not yet – but looking into what happened in the institutions over 40 years ago with video of the horrible conditions in bygone years.

Kudos to Tracy Vedder from KOMO News for her investigation into the death of Jessy  Hamilton and the total mistreatment of him while under the care of the court system.  Jessy’s death is a tragedy and could have been prevented if the judge, lawyer, Cetralia Police Department and the Developmental Disabilities Administration were capable of doing their jobs.

lhttp://www.komonews.com/news/investigations/AutismDeath.html

On another station, Susannah Frame of King 5 News has started her investigation series titled “The Last of the Institutions” with this video.

http://www.king5.com/story/news/local/investigations/2015/11/03/washington-state-developmentally-disabled-residential-habilitation-center/75065984/

Unfortunately, the information that Ms. Frame has shared is decades behind and not factual.  She has gathered her information from biased reports and has chosen to use video which does not depict our state’s therapeutic communities as they are today.  She has chosen to show one campus from a back gate separating the campus from a neighboring park – the only fence she could find on the campus.  When questioned about this blatant misrepresentation of what the campus looked like she wrote “it was the only public space they could find”.  Ms. Frame ought to know better – the campus itself is public property – no gates or fences – she could very well have chosen a setting to show what the campus actually looked like.

Washington STate DSHS did make a clarification of this shot on a comment on the King 5 Website:

DSHS Clarification of Fircrest Video by Susannah Frame

Ms. Frame states that there will be more coming in which she will delve into the various issues more thoroughly.  My hope is that she has facts – not just wishful thinking.

I will be following the “investigation” closely and adding comments here and on King 5 Facebook and website.  I will provide facts and resources.

The issue is not “community” vs “institution” but about how are state can provide quality care to those who need it bases on their support needs and their choice.

We are way ahead of other states but we do need to have better quality of care, better oversight in the community, better pay for caregivers and better training and support.  Continuing to keep the “community” vs “institution” issue as a focus will only detract from what we really need to look at and investigate.  This is irresponsible reporting.

Catch 22 – The Arc “issue”

I recently came across an article written by Irene Tanzman on LinkedIn entitled “Advocacy Organization Catch 22” published June 22, 2015.  I would encourage reading this and in addition taking a look at some of the other insightful articles that she has published.  I felt a breath of fresh air when I first read this yesterday.

There are many concerns regarding “The Arc Issue” as I will call it.  In addition to the facts that Ms. Tanzman has addressed it is important to realize that in order for a chapter to call itself “The Arc” that chapter needs to be aligned with the agenda and policies of the national organization.   Every local and state Arc sign an affiliation agreement with Arc US that the chapter will support the policies of Arc US.  if for some reason a chapter does not support a particular position they are to remain silent and not comment.   So, regardless of what is happening in your region or state, your local Arc can only speak on policies that are dictated from the national organization.

The national policy of The Arc US (taken many years ago in the late 70’s and early 80’s) is that “community” is best and ALL people can be served in the “community.”  There are many problems with this policy:

  1. It is outdated
  2. It is not in alignment with the 1999 US Supreme Court Decision Olmstead v. L.C.
  3. It is not person-centered
  4. It does not indicate why they think this is best, or how it will be achieved.

What are some of the solutions?

Happy ADA Anniversary – DDC Interview tomorrow!

ON this eve of my interview with the Washington State Developmental Disabilities Council I am thinking of all the people who are not able to have their voices heard.  My hope is that the DDC does uphold the 1999 US Supreme Court Decision Olmstead v. L.C. and that they do honor person centered planning.

My hope is that they understand that “inclusion” is defined by the person and what is optimal for that person.  This has been a very difficult concept for many to understand.  Also, we need to take into consideration all the caregivers and support people and what “inclusion” means for them too.  We are all in this together and we need to work together for what is best for the whole.  Not everyone is going to get their way with everything but that does not mean that there are not success stories.

Updates after the interview –

Back from Hiatus

Had to take a hiatus  – but we are now back!

Take a look at this new community – this is one innovative residential option that looks very appealing –

http://www.vinecommunities.com/

I’m looking forward to learning more about this community which is right in my backyard!

Face the facts

Knowing that more budget cuts are coming down the line it is really time for our legislators and advocates to face the facts.  We’ve listened to the rhetoric long enough and many have come to believe what they have heard –  – but the truth has been misinterpreted too long.

When looking at costs for those with intense support needs we need to look at the costs for that population – not the average of the whole.  These costs are dramatically different.  We can all figure out very easily that when people share costs, the individual costs decrease – this is very simple to understand.  Yet, when we are talking about sharing costs for those with developmental disabilities, this simple fact is totally ignored.

I do not hear any advocates saying that someone is “too disabled” to live in the community and I also do not hear the cost of those with intense support needs who choose to live in a community setting.  So-called advocates do not want this talked about but a few of them have slipped out what their sons and daughters have cost our state to allow them the choice of community homes. Everyone should have the choice but also let’s be honest with what these choices cost – not only to the state but the individual themselves, their families and the local cities and communities.

1.  One young man was able to live in the community with the help of 19 hours of nursing care a day for 17 years.  His situation is talked about frequently to illustrate that those with high medical support needs can live in the community but the fact of his state funded 1:1 nursing care is never mentioned.

2.  One young woman lived in a group home for a couple of years until it closed.  She has lived in the intermediate care facility for about 5 years now and is getting ready to move out to a community home of her own.  Our state has spent over $150,000 sound-proofing and remodeling this home that she will live in by herself – and two staff people 24 hours a day.  She will have a male and a female staff person each of the 3 shifts 24 hours a day every day of the year.  Her staffing costs alone will be over $265,000 a year.  This does not include any other costs for her care in the community.

I understand these are two extreme examples but they are real examples of the level of care that those who live in the intermediate care facility could require if they chose to live in a community setting.  When we are talking about downsizing the ICFs we need to look realistically at the costs and they will be astronomical if we even consider safe and appropriate care as a human right.

These are the types of costs that we need to look at when hard choices are made regarding state funds for where those funds will be applied.  I will argue that denying those who choose the ICF/ID as their home not only denies that person but costs everyone in our state.  The costs are not only dollar amounts but costs of quality of life – quality of life for the person, their family and our communities.

It’s time to face the facts and get real about the situation.  Let’s stop the pretending – the pretending is certainly not beneficial to those we are trying to help.