Testimony to:
The Special Committee on Appropriations/Ways and Means
Senator Morris, Chair, Representative Neufeld, Vice
Chair.
September 22nd, 2003
Thank you for asking me to appear
before you today to discuss closure of institutions for people with
developmental disabilities.
My name is Gina McDonald and
I represent the Kansas Association of Centers for Independent Living
(KACIL). KACIL represents the 13
Centers for Independent Living (CIL’s) around the state. Our mission is to coordinate efforts within
Kansas, the United States, and internationally to the extent that these efforts
will further independent living for all.
KACIL will advocate for the civil rights of Kansans with disabilities,
regardless of age.
KACIL believes in the freedom
and dignity of every individual. A
person who has committed no crime should not be sentenced to an
institution. Yet people with
developmental disabilities have received life sentences under the guise that it
is for their own good. What can you
possibly do for an individual behind the walls of an institution that you
cannot do for them behind the walls and doors of a home?
In the late 1970’s, the
Courts recognized the rights of people to live in the least restrictive setting
in the Pennhurst decision. Yet in 2003
we are still debating whether to close facilities. In 2003 we in Kansas still fund two institutions for people with
developmental disabilities, even though we have successfully closed Norton
State Hospital and Winfield State Hospital.
So for KACIL it is not a
matter of whether you will close institutions, the questions are when and
how? Of course we must close
institutions. Not for a cost savings,
but because we know for a fact that people with developmental disabilities can
and do succeed in community based settings.
They do not succeed and flourish in institutions, in fact you have data
to prove that they do not. The December
1998 report “Are People Better Off?
Outcomes of the Closure of Winfield State Hospital” by James Conroy
states that people who left Winfield State Hospital are better off and are
learning new skills. They are
healthier,
even though they are having
less doctor visits, their families visit them more and they are much more
actively engaged in their communities.
In my visits to Winfield
State Hospital, almost all residents were “confined” to wheelchairs. My friends in the disability rights movement
would be upset if they heard me use that term, because most people who use
wheelchairs see them as their freedom, not confinement.
But the wheelchairs I saw at
Winfield in which over 90% of the residents were placed were chairs with four
very small wheels. This made it
difficult if not impossible for the resident to move the chair themselves.
I wonder how many people
still need to use wheelchairs since they’ve moved to the community. I have anecdotal reports from community
service providers who told me that residents that came from Winfield, after a
month or so no longer needed to use wheelchairs. A miracle? I think the
only miracle is that we realize that institutions by their nature are designed
to keep the place running smoothly, not to enhance individual rights and
skills.
The Conroy report also
discusses the success of closing institutions for people with MR/DD in other
states. We can learn from our own
lessons and the successes of other states as Kansas looks to close another
institution.
Kansas will have some major
challenges to consider as we look at deinstitutionalizing our services. KACIL believes those issues include, but are
not limited to:
1. THE DD FUNDING SYSTEM.
ISSUE.
As long as the State continues
to use a managed care mentality for providing services to people with
developmental disabilities, the system will not work for people with severe
disabilities. People leaving facilities
will need individualized programs and funding streams in order to achieve
success. The program plan will need to
allow for flexibility so that changes can be made and paid for without negative
consequences either to the provider or the consumer.
The current system is
designed to keep people where they are at, not to improve or achieve
outcomes. As people gain more skills
the community service providers are “rewarded” by getting less funding. With individualized funding or fee for service,
the provider is only paid for services provided. The consumer has the opportunity to learn skills in the most
appropriate and least restrictive setting to meet their needs.
Bundling of services, along
with the “tier” system make it very difficult and cost prohibitive to provide
individual services. For example, how
can I select my own attendant when the group home employs the attendant and the
needs of the whole group must be taken into account?
How can I “de bundle”
services by getting a job coach to come with me on a job when they work with
ten other people at the sheltered workshop?
SOLUTION.
If not for all, at least for
people leaving the state institutions have individual rates for services on a
plan of care. If the service is not used, you don’t pay for it. If it is, it is
individualized and you pay for it. This
should continue as long as the person receives services.
That doesn’t mean someone
can’t live in a group home or a workshop, but you would pay for their services
as they get them. This would also allow
the flexibility and creativity to meet individual needs.
A real individual plan would
allow for creating solutions to challenging behaviors that some individuals
will have as a result of their disability and in some cases as a result of
years of institutional behavior.
This can also increase the
capacity of the consumer and their family to choose the provider of
choice.
2. ENTITLEMENT.
As you are aware,
institutions are an entitlement under Title XIX and Home and Community Based
Services are an option to the state. As
you downsize or eliminate institutions, will HCBS become the entitlement? As we look to recent Supreme Court cases
such as Olmstead and the Fisher v. Oklahoma case we are seeing a trend by the
Courts which move us closer to community entitlement. The Medicaid Community Attendant Supports and Services Act
(MiCASSA) currently has many cosponsors including all Kansas House Members and
Senator Pat Roberts. When that law
passes, community services will be an entitlement.
The White House introduced
their “New Freedom Initiatives” and many states including Kansas have received
grants to plan for consumer controlled community based services.
What will that mean for state
budgets? How will long term care
programs look and be funded in the future?
I don’t have solutions that you are ready to embrace, but I suggest that
we begin the dialogue around these issues as we consider closing institutions.
Further dialogue may be
beneficial to determine the definition of institutions and as we plan for downsizing. Let’s be clear as to what we mean by that
term. It’s easy to define that as
“Parsons State Hospital and KNI”. But
many of us would contend that IFC/MR’s are also institutions, and most of the
members of KACIL would also add group homes to that definition.
3. THE WAITING LIST AND THOSE
PEOPLE WHO CONSIDER THEMSELVES TO
BE UNDERSERVED.
ISSUE.
How will the people who have
been waiting for services be considered as we look at possible hospital
closure? KACIL believes very strongly
in moving people out of facilities first.
But once again we are saying that people who have kept their children at
home at little or no cost to the state will go to the back of the line while
people who felt they needed to institutionalize their child will get services
first.
SOLUTION.
As we consider closure and
downsizing let’s do it for the right reason.
Let’s make decisions based on the fact that we believe that people can
get needed services in more integrated natural living situations. Let us not consider this as a cost savings
measure. Yes, we know it costs less to
provide services in the community, but as we consider closing institutions and
realize savings, let’s put those dollars toward the waiting lists and provide
services to everyone who qualifies.
4. CLOSURE DECISION.
A number of advocates got
together and proposed some steps to be taken in closing a facility. KACIL supports those steps as a roadmap for
closure.
If you create a Closure
Commission we ask for representation by members of Self Advocates Coalition of
Kansas and People First to be included as commission members.
In closing, I have worked
with people with developmental disabilities in one capacity or another for over
25 years. I have never met one person
who said they’d like to go back to the institution, except maybe to visit
friends who live there. I never heard
positive stories about their time in institutions and some of the stories I
heard were horrific. I’ve never heard
a non disabled person say, “When I grow up, I want to go live in an
institution!”
Will there be challenges and
people with difficult behaviors? Of
course there will. Are the problems so
big they cannot be resolved? No,
absolutely not. Any program that can be
implemented inside the walls of an institution can also be implemented inside
the walls of a home.
Are community services
ready? Yes, I believe they are, as long
as there is adequate funding, supports and flexibility.
Thank you for the opportunity
to speak with you today.
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