This past year, advocates have been spending a great deal of time on the 1115 Medicaid
Transformation Waiver, implementation of the Affordable Care Act and Integrated Care.
Needless to say that the Governor’s Office, various Division Directors and the Secretary
all have their hands full. But as Daniel Burnham once said, “Make no small plans.”
The most time consuming for me has been the work on the 1115 Waiver and its
expansive transformation of the Medicaid system here in Illinois. Medicaid is the lifeline
for people with disabilities and their families, so this is important work. The Governor’s
Office of Health Care Innovation & Transformation (GOHIT) is taking the lead on the
1115 Waiver. GOHIT has staff support of the Departments as well as expert consultants
to navigate the federal rules, regulations and facilitate Dept staff and stakeholder
meetings. There are no less than 33 work groups and subcommittees with over 900
stakeholders participating in this process, including The Arc. This is an enormous process
We know that the 1115 Medicaid Transformation Waiver is a very high priority for
Governor Quinn. In fact, the Governor has had in-person discussions with Sylvia
Mathews Burwell, President Obama’s new Health & Human Services (HHS) Secretary.
The Governor is vested in the 1115 Waiver and wants its quick approval. The Secretary
agrees with this.
For my part, I try to attend as many of these workgroups as possible, my priorities being
the Services & Supports and Integrated Delivery Systems Reform sections of the waiver.
Other key Work Group areas include: Workforce, Data & Technology and Public Health
GOHIT is now planning a meeting on October 29th at 1:00 p.m. to bring these five Work
Groups together. At this meeting we should be able to see the products of the Work
Groups and Subcommittees and how they fit together in the big picture. I’m sure there
is going to be a lot of overlap in our work.
What I am beginning to see is how this transformation may all work together.
With the Governor’s Office of Health Innovation & Transformation in the lead as the
responsible organization, the nine different waivers will be melded into one seamless
waiver. In theory, this should make it easier for individuals to choose from a wider range
of choices offered for the services that were previously only a choice in one waiver. It is
also being promoted that the menu will be more flexible as well.
As an example, the primary community residential option for an individual with an
intellectual and developmental disability (IDD) is 24 hour CILA. What this new waiver
could do is to offer a selection of choices from the menu from 24 hour CILA to
independent living and other options in between such as supported living, host family,
etc. Similarly we could see the current primary day service option of Developmental
Training being expanded to offer a menu focusing more on employment but also
including Developmental Training, community integration, volunteering, etc.
In addition to more choices and options, the Administration is attempting to get an
additional $5.3 billion in new federal monies to reduce the PUNS Waiting List and
increase community rates.
Currently, GOHIT is in the beginning stages of the negotiations with the Centers for
Medicare & Medicaid (CMS) with only two meetings to date but may be meeting
weekly soon. To complicate matters, the Illinois 1115 Medicaid Transformation
Waiver is the largest and most expensive 1115 Waiver ever submitted to CMS. The
proposed Waiver also includes supports/services not traditionally approved in
Medicaid Waivers such as housing, which is integral to this waiver. This is a colossal
undertaking for sure.
Let’s say the Illinois 1115 Medicaid Transformation Waiver gets approved, and it
gets approved quickly as the Governor and the HHS Secretary are urging.
This transformation could kick up the rebalancing of the supports/services for
individuals with IDD here in Illinois. There is no doubt there would be more choices
on the menu of supports/services. There is also no doubt that the current IDD
system is antiquated, institutional, underfunded and in need of major repair or
should I say, “transformation”?
I also have to ask if this major transformation does take place, is there really any
need for Phase Three of Integrated Care? I believe, in the long run, Phase One
of Integrated Care will be better for individuals with IDD, especially individuals in
The Developmental Disability model is a social, educational model, not a medical
model under insurance companies. Education here in Illinois is not under the
umbrella of Integrated Care and Developmental Disabilities shouldn’t be.