Testimony to:
Senate Ways and means Committee
Senator Steve Morris, Chair
March 2, 2004
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 rises
in strong support for SB 531.
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.
If you have any questions, I can be reached at 785-825-2675.