Fw: Leaders in The Arc: State Operated Group Homes

[Guest guest]

In case you think this piece of legislation is a good idea...read my comments to

Senator Steans, a few other Senators, Tony auski and Phil Milsk...

This is a piece of legislation that has ASFCME written all over it...

Ellen

Ellen Garber Bronfeld

egskb@...

Leaders in The Arc: State Operated Group Homes

Dear Senator Steans:

While I commend you for some creative thinking in helping individuals with

disabilities achieve community living in an affordable, sustainable way, I have

some concerns about SB 1614.

My main concern is that in creating a " new " 6-bed community living arrangement,

we will lock in a model that doesn't work. While 6-bed homes are a vast

improvement over 100 or more bed institutions, what we really need is a new

Medicaid Home and Community Based Services (HCBS) waiver that promotes and

supports individuals in living arrangements and meaningful days/employment that

work best for them with friends of their choice. What we need is a waiver

and/or legislation that reflects both individual choice, individual need,

individual plans and individual resources and that creates a way to measure

valued outcomes consistent with the four goals of the ADA: Equality of

opportunity; Independent living; Economic self sufficiency; and Full

participation.

According to the latest data from the Institute and the University of

Minnesota, the normative living arrangement is three or fewer individuals with

intellectual disabilities. The 6-bed model is a 1990's model. It will also end

up with the State purchasing and/or building expensive property to defend

forever; a problem we already have with many providers who see real estate as

their essence for being rather than services and supports.

We know that currently, we do not have quality in housing and programming for

people with intellectual disabilities in Illinois. We fail in almost every area

on most national data sets. We need to be budgeting for outcomes, in which

case, the question becomes, what should the state be buying on behalf of

individuals with disabilities and how can it measure what it buys in order to

ensure effectiveness and efficiency? If the legislature can focus on Olmstead,

with the outcome of living arrangements in the most integrated setting, along

with the adoption of the tenets of the ADA, that would be a starting point for

systemic change in Illinois.

It seems to me that creating 6-bed group homes that will be run by the State,

provides a quick fix for the elected officials, in order to mollify the unions,

without much thought for the valued outcomes desired for individuals with

intellectual disabilities. It will also be difficult for long term

institutional staff to make a dramatic shift in their philosophy to see

individuals as citizens rather than patients or residents.

I know some folks will be grateful for some baby steps toward closing the large

state institutions, and close them, we should. But, I think it would be

worthwhile to step back and think about the ramifications of creating a new

model, especially an outdated one, before we fix the system that is already

failing the individuals it was designed to serve.

Thanks for all that you do, to help citizens with intellectual disabilities in

Illinois.

Ellen

Ellen Garber Bronfeld

egskb@...