Senate Health Committee Hears Bill which looks to close ICF/IDD

Today SB 5594 was had public comments in the Senate Health Committee (Washington State)

There are actually some wonderful new ideas expressed in this bill (Federally Qualified Comprehensive Community Healthcare Clinic!!) but plans  to consolidate  from a combined campus of a skilled nursing facility and an intermediate care facility to just a skilled nursing facility is troubling.  This is  not explicitly written in the language but it is clear this is the goal.

The bill states a building at Fircrest must be remodeled and updated to serve as a skilled nursing facility.  Other steps must be taken to consolidate other buildings and ensure residents are provided the opportunity to stay at Fircrest or move into the community.

Given that Fircrest will only have a skilled nursing facility, what will happen to the residents who are not eligible for those services but choose to stay at Fircrest in an ICF/ID?  The bill does not address this population that currently resides at Fircrest.

“Former Fircrest School residents who fail to succeed in the community may, after repeated failures, remain in the community or may choose to move to another residential habilitation center; however, former Fircrest School residents may not return to Fircrest School.”

The other HUGE issue is that the community is far from ready to be able to accommodate the needs of the number of residents who may choose to live off campus.  Already there is a long waiting list for housing, staff and other services.

The critical issue that needs to be addressed before any changes can be made is that of supported living wages and supports.  These wages and supports need to be appropriately funded to provide the services.  This is the system that will provide stability, success and sustainability to community residential settings and is the issue that needs to be addressed as a first step to any issues of consolidation of the intermediate care facility.

When does “choice” mean “restriction”

Many things are changing in the name of “choice” but is this all really choice or is it putting more restrictions on people?

By micromanaging definition of words such as “community” and “employment” our government and advocates are actually reducing the alternatives by creating restrictions on how funds are spent.  Reducing alternatives which greatly benefit many of our loved ones means they lose the ability to make choices.

Having these strings attached to federal funds, funds which are critical to our most vulnerable citizens, forces them into situations which may not be in their best interest.  Is this what choice and alternatives are about?

The fact of the matter is that many do want to live in community settings with similar people, share supports and be able to walk independently outside their home to a friends, an event, or to shop. The other fact is that by eliminating “sheltered workshops”, without replacing with an alternative, forces the people who work in those jobs to be shuttered away in a home, isolated from their community.  Is this what choice is about?

Chris Collins, R-Clarence, represents the House of Representatives’ 27th District, which includes about half of Ontario County, New York, writes about this issue with regards to sheltered workshops.

“The federal government is not in a position to direct all disabled people to join competitive employment. Ultimately, the choice to stay in a workshop should be an employment option for the disabled who are not yet ready to make their transition to a competitive environment. Parents and providers are concerned about finding jobs in this tough economy, especially when non-disabled unemployment rates remain high and stagnant.”

Read more: http://www.websterpost.com/article/20131126/OPINION/131129736/?tag=1#ixzz2mH2WjH46

“Choice of employment” in this situation means the choice to not work since in reality many of these people would be unemployable in a competitive employment market.  There are not enough funds to provide the needed support for these folks to hold a job in a competitive job market and the reality of the situation is these folks will be left  with nothing – is that choice?

 

Please support real choice and real alternatives!

 

Life Long Learning

I have been involved in networking with families and support groups for life long learning programs.  These programs are intended to keep people active, engaged and involved in the community, focusing on activities which are meaningful for the person involved.  This is not job training and finding a job is not the goal of this type of program.  The goal is for the person involved to build relationships and participate in meaningful activities which are based on that person’s interests and desires.

By focusing on life long learning and engaging the person with their interests, we are experiencing true integration and inclusion.

The Building Blocks of Life Long Learning

How to Provide for Community Integration

Supported employment is becoming the only program that will be available for people with intellectual disabilities after the age of 21.  This program is replacing the sheltered workshops and in so doing is eliminating a very important part of many people’s lives. Please do not misunderstand the issue that I am trying to convey – read the story before making comments.

While supported employment is also a needed and critical program, it does not best serve the needs of many of our loved ones – particularly those with a dual diagnosis of Intellectual disability and mental illness of mania, psychosis or schizophrenia.  The population with a dual diagnosis is in need of a program which provides a stable setting every day of the week for several hours.  They do not do well in settings in which they only have support a few hours a week and then are left to their own devices to manage the rest of their time.

As a parent of one of these people with a dual diagnosis, I know that the supported employment program will not be the program that serves his needs.  There are so many opportunities to include him in community activities in other programs but if all the funds are used in the supported employment programs, there will be nothing left for those who need another type of program to function optimally.

I was recently at a local meeting area which has several eateries which serve a commons.  I witnessed a young man who was being supported by a “coach” in his job.  He clearly had no interest in the job, was spinning around, looking at the ceiling, while the coach would take a tea bag, put it in his hand and then he would drop it in the correct bin.  The coach was attempting much hand-over-hand work with him but it really was her doing the work.  She then picked up the bin of dirty dishes; put it on the push cart and then they both pushed the cart out of the commons.

This scenario made me feel really sad.  If a person has only so much support to enable them to be out in the community and experience life, I would much rather have my son experiencing opportunities that he enjoys and which get him out with people in a more natural way.  These activities are going grocery shopping, going to the library, going to a restaurant, walking to the park, going to church – these are all normal activities which he greatly enjoys and interacts with all types of people.  These are activities which he needs a 1:1 support person to help him.

Other activities that my son greatly enjoys are meeting with people and being in groups.  This is what the “sheltered workshop” provides for him.  No, he doesn’t do much work there and it’s not training him for a future job but it does provide stability, group activities which he craves, interaction with people, and structure to his day.  These are all critical components to his care which will be gone if the sheltered workshop is closed.  The sheltered workshop is not a sweat shop nor is it slave labor.  He does learn skills and is capable of some work with 1:1 support at all times. He gets paid for the piece work that he is able to accomplish but that is definitely not his motivation since he does not understand the economics of having a job and supporting himself.

If my son was only allowed 5 hours a week of a support person, it would be much more beneficial to him to use that for activities which he enjoys and activities which he chooses rather than a type of “employment” that means nothing to him and is only there to make others feel good that they are accomplishing something.  This type of “employment” would be torture for my son.

My son and many like him are not going to be cured and will not be “getting better”.  Yes, they are able to learn but will always need a high level of support.  They are not people who can be taught a skill and then be sent off independently to do that skill.  Even when they know how to do something, they need the constant support to maintain focus and follow through.

People like my son are very much like people with Alzheimer’s disease.  A similar condition is dementia.  Dementia, which my son has, is a brain disorder which obstructs and diminishes cognitive performance such as memory, judgment, personality and social function.  We need to be realistic in the choices that we make with services.