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.

 

 

What is an Intellectual Disability (ID)

This is a short video put out by The American Association for Intellectual and Developmental Disabilities.  It helps to clarify what these terms mean.   I have tried to communicate for years – IQ cannot be the only determining factor in seeing how a person is able to function.  This multidimensional definition is much more in tune with reality.

The highlights of the information are:

There can be HUGE differences between someone with a developmental disability and one with an intellectual disability – a person with a DD does not necessarily have an ID. I would venture to say that every person who lives in the  Residential Habilitation Center (RHC)  has an ID of significant support needs.

Also with these new definitions they are looking more holistically and in a multidimensional view of human function.

These are:

1. Intellectual

2. Adaptive behavior

3. Health

4. Participation

5. Context (cultural aspect)

The definition of ID must include the individual’s assessed supports needs. The person’s level of function is directly related to the supports they receive. When you look at the potential with appropriate supports then you have a complete system.

The supports must be sustainable in order to maintain functioning of the system.

We have the appropriate support systems in place for our residents who live in the RHC – and it has taken a lot of work to get to this point, we have oversight, we have trained staff, we have community, we have health care – we want others to have these same critical supports and this is why we advocate so strongly for a continuum of care.

Removing these supports from those who need them to function is not in the best interest of ANYONE.

Interesting Comments From The Arc of Snohomish County

This goes back to my own (non-scientific but easy and useful) assessment of function and needed supports for RHC communities:

1.  Can the person independently cross the street

2.  Can the person independently go to a familiar grocery store, pick out one familiar item, stand in line and pay for the item?

3.  Can the person independently and appropriately manage their own personal care needs?

My guess would be that for people who need supports to do all 3 of the above tasks, their support needs are quite high.  It would be extremely difficult and expensive to safely care for this person in an independent living home.  For people who have this high of support needs and for those who choose to live in an RHC community, the RHC community is the safest, least restrictive  and most cost effective environment for them.  This is where they will consistently receive the needed supports from trained and knowledgable staff in order to function at their optimal level.

This is not everyone’s choice but for those who do choose this environment,

why are they being denied that human and civil right?