Testimony
to CMS
Regarding
the HCBS Waiver for Developmental Disabilities.
August
3, 2003
Thank
you for the opportunity to provide feedback on the Home and Community Based
Services Waiver for people with developmental disabilities. I am 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.
CIL’s
are community based, not for profit organizations which are governed by federal
and state requirements that their governing board and a majority of all staff
be persons with disabilities. This
concept is known as consumer control.
The
13 CIL’s in Kansas provide at least five core services; information and
referral, peer support, independent living skills training,
deinstitutionalization and systems and individual advocacy.
REVIEW FUNDING SOURCES FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES.
There
continues to be strong disincentive for people with mental retardation and
other developmental disabilities to become independent. The majority of all funding is tied up in
matching the waiver using Title XIX funds.
The regulations written around that funding source give very little
options for community providers to be reimbursed for teaching people to become
independent. Rules and regulations
encourage and support dependency models.
In
addition, the state, in an effort to maximize federal funds has created a
funding system based on tiers and using a managed care model that rewards more
process as opposed to outcomes. It further is based on a managed care model as
opposed to a fee for service model.
The
result is that agencies are given an allocation and told to serve as many
people as is possible. That lends itself to creating group services as opposed
to one on one. The tier rate says that
the less skills the individuals you have in your group posses, the more money
you will be reimbursed. This is a process model which rewards dependency and discourages
training.
KACIL
recommends a review of programs that were implemented by community providers
prior to the development of the current funding systems. There were programs out there that fostered
independence. Direct SRS to provide
funding for model programs that are effective at promoting independence. They work, but they must be funded. KACIL believes that current funding can be
used. It will require a change in
regulations and in thinking.
We
must also look at the invasive and sometimes discriminatory regulations used as
part of the DD Reform Act that prevent Community Based Agencies from being
reimbursed for providing real integrated services for people with developmental
disabilities. There must be more
freedom for people with developmental disabilities to take risks without the
provider agency being held responsible for all actions of consumers. People learn from their mistakes, yet for
people who we assume have the most difficult time learning, people with
developmental disabilities, don’t have that option. We reward protection and control and by doing so, minimize the
individuals ability to learn, grow and become more independent.
The
current system, for example, does not allow people to direct their personal
assistance services unless they live at home with family. They cannot therefore use Personal
Assistance Services in their own apartments or homes.
Yet
many people do this, but only as an exception to the rule.
KACIL
is aware that the state is writing a waiver for self determination. We do not
disagree with that concept, but believe that if the state would return to the
original regulations and funding methods used immediately after the
Developmental Disabilities Act was passed, they could achieve similar
objectives.
Thank
you for the opportunity to discuss the HCBS Waiver. I can be reached for questions or discussion at 785-825-2675 or
at ginamcd@aol.com.
Thank
you,
Gina
McDonald