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.



Cost and Community – Part 1

I have not been involved in politics for very long and it has been a steep learning curve for me.  Prior to my son diving into prolonged crisis I had contacted The Arc of King County for Parent to Parent and other ideas.  There was never a parent to parent “match” for me and the message I got from members of The Arc of King County was for me to go talk to my legislators.  I felt alienated by the very group which was supposedly my advocate.

After several years of crisis after crisis, family destruction, loss of jobs and income, and near loss of life, my son was able to be stabilized in the Residential Habilitation Center (RHC) or Intermediate Care Facility for people with Intellectual Disabilities (ICF/ID).  It was after this that I became to understand the importance of advocacy for our loved ones and I also had time to learn and research on the issue.

I also realized then that The Arc was not an advocate for those with high support needs and this is confirmed over and over again from families.  Most recently a family in crisis in need of a supported living arrangement called The Arc of King County and was told “we only serve higher functioning individuals” and had a “I don’t care attitude” and was very “rude.”

This is not meant to be an attack on The Arc – they have done great work for many but it also needs is noted that they do not speak for the whole community of people with intellectual disabilities and do not support the wide continuum of care which includes intensive support needs of those for whom campus type communities best serve.  I would really like to see this issue addressed seriously rather than being dismissed and disrespected without even listening to the real issues.

I scoured original resources, requested data from state agencies through public record requests, studied many reports and research projects and gathered some great information which could really benefit many.  The problem is that this information has not been shared through the “politically correct” channels and is negated, tossed aside and discounted.  It’s a shame because if people just took the time to look at it and ask questions, they would  learn something new and put information to good use.  This knowledge could help alleviate more crisis.

Reading research articles by reputable authors and published in major journals, I have also seen that research does not address the issues of those with the highest support needs.  The research focuses on those who are higher functioning and what happens is this information is then generalized to the population as a whole.  This is a very dangerous generalization which will backfire.

The two major issues are cost and community and I think that almost all people involved agree that these are critical issues. There are major flaws in how these issues are reported and discussed and this is where there is a great divide.

In upcoming posts I will address the issues of “cost” and “community” and give references to data and research.  My hope is that the logic will come through and people will begin to question the rhetoric that just does not add up and make sense.



Informing Families Building Trust – Clarifying Community

I received my newsletter today from the Washington State Informing Families Building Trust and again, choice is being taken away but we are told we are given more choice.  I wonder about the marketing strategies used which get people to believe things that are clearly untrue and to support ideas which are harmful to the group as a whole.  The strategies used are powerful and difficult to undo.

I often wonder if the people involved in selling these programs really and honestly believe what they are saying.  Have they been out in the streets, have they experienced the life of parents struggling to survive and keep their children and adult children safe and healthy, have they experienced success in settings which may not fall under their narrow definition of “community?”

The new definition of an integrated setting comes, in part, as a response to states and other stakeholders who are interested in using HCBS waivers in segregated community-based settings. According to the Centers for Medicaid and Medicare (CMS), “These settings often do not allow individuals to choose whether or with whom they share a room; limit individuals’ freedom of choice on daily living experiences such as meals, visitors, activities; and limit individuals’ opportunities to pursue community activities.”

As one who has experienced success in what would be described as a “segregated setting” (although it is so far from what segregated means in reality) – my son has so much choice about his daily activities, food, opportunities to pursue community activities, his visitors, a private room which he can decorate as he wants, and lives in a a whole community who knows him and with people with whom he connects.

I know for a fact that he would not have this freedom and choice if he lived in what CMS would describe as “community.”  The “community” they describe would be a prison cell for my son and people with similar support needs.  Their “community” would mean that he would sit in a house with roommates who were assigned there, with staff who may not know him.  The staff would turn over rapidly since the wages are low and there is very little support.  If my son wanted to go out, it would be dependent on if the staff person had a car (how would I even know if their car was safe?) and was able to drive.  It would also depend on if there was enough staff to stay with the other roommate(s) so that a staff person could take my son out.  There would be no flexibility in adjusting staff for various outings since the house would be isolated from other similar homes and therefore have no ability to share services and activities.

Below are some real life experiences I have been told:

1.  In looking for a supported living home, we were only allowed to go there when the residents were not home.  It was a violation of privacy to know who else lived there.  We would not know who our son would be living with.

2.  We were promised to have a supported living home with only female roommates – as it turned out, the house had two males and one of those already had the master bedroom with a private bath.

3. The supported living agency said that they would move some people around to make room for my son.  Can they just decide to move people to make room for others?

4. There are no homes in our community.  My daughter is on a core waiver and was in crisis emergent short term stay at an ICF/ID.  DDA promised us a home in our community but there are no “openings” and no foreseeable openings in the future.  We are in severe crisis while there is a whole unit at our local ICF/ID where we have requested placement but admissions are closed.  There are no options – do I just take her to the hospital now?

Just to highlight the issues of this new CMS rule.  This rule will create more crisis because there will be LESS choice for residential services.  This means there will be little support for those who do not fit the mold of the type person which CMS seems to think all people with intellectual disabilities come from.  This rule will save CMS money because the options will be severely limited.  This does not mean that more people will be served according to their individual support needs. This means that fewer and fewer people will be served because the choices are limited.

We need someone to market the honest truth about caring for our loved ones, the supports they need, the supports they choose and the communities which they want to live in.



About 10 minutes after posting my last post I received a message from a friend asking for help.  She was concerned about a young woman who lives in a supported living home for people with intellectual disabilities in her community.

This woman has been out in the middle of the street in a wheelchair asking any passer-by to use the phone so she can call the psychiatric hospital, so she can call 911 or so she can call a family member.  She has been seen out in all kinds of weather and not dressed appropriately for the weather, in bare feet walking with her wheelchair and at all times of the day and night.  She has had staff with her and when neighbors stop to inquire the staff says it’s her choice – they can’t do anything.

Other times she has been left with no staff and she has asked strangers for help to push her wheelchair.  Many times the police are called, they arrive and check things out, the agency which runs the home has been contacted by neighbors who are concerned and nothing improves for this woman.

I advised my friend to call the End Harm Hotline and report this – but I’m not hopeful that anything will improve.  If this was your adult child who was living in a supported living home, would you consider this as a safe and appropriate setting?  I sure wouldn’t but this is the type of “community” setting which CMS believes is better for these individuals.

Choice does not mean being allowed to do anything you want whenever you want – choice needs to have guidelines and choice needs to be within the person’s understanding of consequences for making those decisions as much as possible.

Where is the logic in this plan?