I have been on the road a lot so I wanted to share with you some good news and
advocacy that I have come across.

Today, I meet with Director Casey to discuss flexible day supports/services .

Thursday I am back in Chicago to meet with Jeff Joy, CEO and President of IlliniCare Health
Plan. The topic with Jeff is Phase 3 of managed care. Phase 3 is where all developmental
disability services will be placed under the umbrella of managed care. By the way, you have
probably heard that Director Hamos stated last week that Phase 3 will not be considered in
2014, if at all. I know our position paper opposing Phase 3 has been very well circulated and
caused much discussion within the administration.

I had the opportunity to meet with the Ligas Court Monitor Tony Records recently and I must say
that the settlement of the lawsuit and the implementation of the consent decree. Did you know that
1,250 individuals are now receiving new services and another 450 are in the pipeline for new
services? Did you know that already 360 individuals have moved and exercised their right to live
in the community moving out of ICF/DD’s? 500 individuals are scheduled to move off the waiting list
this year and individuals in ICF/DD’s will continue to exercise their choice for community living because
of the good work of the Court Monitor, the attorney’s at Equip for Equality and the leadership of Kevin
Casey, the Director of the Division of Developmental Disabilities. Tony informed he is working on his
second report to the Court on Ligas. I look forward to sharing that report with you and the Illinois
Disability System rebalances from institutional to community supports/services.

I really liked this opinion from the New American Movement for People with Disabilities! It sounds very
familiar to me. Are they talking about Illinois???

It Is Time To Close Them All

The New American Movement Team would like to express our concern over the continued news
releases of abuse of people with disabilities left in the care of state facilities. As families’ plea in the
state of New Jersey – even filing a lawsuit against the conclusions of the institutional closure task
force- NAMPWD is baffled that institutional care is still held in higher esteem than community living.
We can continue to question how many more incidents of abuse and neglect is it going to take for
people with disabilities before we are on the same page regarding the best environment of care
for this population, or we can take action now, once and for all against institutional care.

For professionals, support staff and families, no amount of empathetic rhetoric about the vulnerability
of this population is going to sway the supporters of institutions. The NAMPWD has evoked “what
would you want” enough times to realize the futileness of our approach, but for a moment let’s
indulge the thought. If we are all fortunate enough and make it to an old and fragile condition, I know
we are all hoping to reside in a nursing facility, away from the home we built and the children we
raised, the food we’re accustomed to, and the neighbors we love to hate. I am looking forward
to the day when someone else decides when to go to the doctor, when and what to eat, and when
I can see my friends. Those decisions are becoming too burdensome for me already.

We are always met with “they are too disabled to…” or “their needs are too complicated,” in which
we respond with “But it is being done in 13 other states across the country, your loved one is not
the only one in the country with [insert rare condition here],” to no avail. For the families and loved
ones of developmental center residents, their fear and concern of their loved one is no match for any
of the proven research about community living. Supporters of community living can espouse facts
about community integration, relationship building and matched care until we are blue in the face,
yet we always fall short of truly understanding the needs of developmental center residents. If that
is the case, we challenge the loved ones of developmental center residents to examine the transition
of the individuals who has already moved out of the state facility – oh that’s right, their needs are too
severe to even compare to the individuals in the community.

So in a final attempt, let’s talk facts about state run facilities and their “unmatched” care.

Last week, as a cherry on the Department of Justice’s findings on Woodbridge and North Jersey Developmental Centers’ sundae, an article was published in The New York Times entitled “New York
State Lags on Firing Workers Who Abuse Disabled Patients” highlighting the concessions made by
the state in their lackadaisical approach to terminating employees who have abused people with
disabilities in their care.
The article, written by Danny Hakim, opens “One state worker bit a patient’s ear,” and continues to
highlight threatening and abusive behavior on behalf of state employees. Unlike the Department of
Justice’s findings (where the injuries came from “unknown origins”) all of the state employees were
found responsible of wrong doing…and all of them remained employed at the facility. This article
emerges just two years after The New York Times published an article noting how few state
employees were fired even after termination was recommended. How can this be?

The article cites that the arbitrators of the cases of abuse for state employees are given “wide latitude”
in the discernment process and often decide with the unions. Only about one fourth of employees
who are found culpable for the abuse incidents are terminated. If only one quarter of the employees
are terminated, what is the threshold for termination? What is the arbitrary line in the sand that an
employee has to cross to lose their job?

The New York State administration claims that this “blind eye” to abuse is the result of the union
policies, yet should we continue to trust state facilities if these are the practices they are ignorantly condoning?

Now, the NAMPWD Team is pro-labor organization, but we are certainly not for protecting the jobs of individuals who abuse the individuals in their care.  As a support staff, either in a state-run facility or home in the community, your sole job is to enhance the lives of the individuals you care for, not harm or hinder them. The ability of these unions to wrongfully protect the jobs of abusive employees is unconscionable.

The NAMPWD asks you to read to read our entry on the Department of Justice’s findings here and mull over some of the findings as it relates to the care of people with disabilities. Yes, we can argue over our ability to truly empathize with the people we love and support, or what kind of care we would want in a particular situation, yet I fail to see how the debate can continue when these facts about developmental centers are presented.

Please visit our website at www.nampwd.org and our blog at www.nampwd.wordpress.com.
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New American Movement for People with Disabilities

Tony Paulauski
Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)
815-464-1832 (CELL)