SRS Transition Oversight Committee
Long Term Care Services
October 10th, 2000
Thank
you for the opportunity to present before you today. My name is Gina McDonald and I am the President of the Kansas
Association of Centers for Independent Living (KACIL). KACIL represents 13 Centers for Independent
Living around the state. Our mission is
to work for the rights of people of all ages who experience disabilities.
I
want to start by thanking this committee for your interest and work on Long
Term Care issues. As you well know, the
average age of citizens in this state and in this country continues to rise. As we age, it is likely that many of us will
experience disabling conditions that will cause us to have to make changes to
our lifestyle.
In
the coming years, many of us will have need for supports which will allow us to
remain in our homes. Many of us want
that option. KACIL agrees that there
should be mechanisms other than dependency on the state to ensure all citizens
have the option of remaining in place as we age.
For
many individuals who experience significant disabilities, there are few
options. Many individuals we have asked
to testify before committees over the years have been people who thought they
had prepared for accidents, illnesses and other events by saving money, having
health care insurance and some even had long term care insurance. Many people had good paying jobs prior to
their accident or illness.
But
with one catastrophic illness or injury their insurance capped out. They reached their lifetime limit of
$1,000,000.00. They soon depleted their
savings accounts. They could not go back to their former employment because of
real or perceived limitations. They
depended on their families for as long as possible, but the strain was too much
on families who had both spouses working and children to raise. Or, because of the mobility of individuals
there often is no family member within close proximity to provide care.
The
other group is individuals who are born with severe disabilities. They have a 78% unemployment rate. They are most likely to be eligible for
services.
And
so for many individuals, their only option is to look to the state for
support. The options the state can
provide are nursing facility care or a waiting list for Home and Community
Based Services Waiver.
We’ve
heard suggestions about using volunteers or neighbors to provide needed home and
community-based services. Imagine how
you’d feel about waiting in bed for a volunteer or a neighbor to get you out of
bed. If they didn’t feel like coming,
you are stuck in bed all day and all night.
Most of us don’t even invite our neighbors into our homes anymore. Imagine having to ask your neighbor to
assist you in getting on and off the toilet.
Each
year along with SRS, KACIL attempts to predict the number of new individuals
who will need services under the waiver.
Each year we have underestimated, and each year KACIL comes before you
asking for more funding.
As
I sat during the last meeting of this committee, I was so pleased to hear Dr.
Redbird from KU explain that they have the same issues trying to determine the
number of people with disabilities in the state. I also was pleased to hear Dr. Redbird quote from one of her
teachers, Dr. Irv Zola. He was a man
with a significant disability who studied issues related to people with
disabilities.
As
we look to the future needs and wants of people with disabilities we have to go
back to where we came from.
Under the HCBS Waivers, consumers are screened using a uniform assessment instrument (UAI) which measures activities of daily living. It determines what assistance the individual needs in order to remain safely in their own home. The UAI was originally developed by Dr, Redford to be objective, and if administered correctly, should determine only what the individual needs to remain safe and healthy.
The
Independent Living specialist then goes over the UAI with the consumer to
determine what services they need.
Those services are written on a Plan of care. Service providers are determined with the individual. If the individual needs personal assistance
services, they are given the option to self direct those services or to have an
agency such as a home health agency direct their care.
The
Area Medicaid manager from Social and Rehabilitation Services reviews the plan
of care and approves the services. They
continue to do ongoing oversight of the program during the time the individual
receives services.
Because
of the limited funds available to provide services under the waiver, KACIL has
made every effort to work with SRS to assure that only the absolute needs of
the individual are being included on the plan of care. For every “want” that is funded as opposed
to “need”, that is one more person waiting for services.
To
complicate the matter, SRS also has a section called Adult abuse neglect and
exploitation. What is considered a
“want” by one department of SRS, may be a need for another department. It is sometimes confusing for consumers and I.L. Specialists to determine the fine line
between wants and needs. I believe this
is even more evident on the MR/DD Waiver.
KACIL
works with SRS to provide training to Independent living Counselors regarding
wants vs. needs. Let me share a part of that training with you.
In
addition to the training, KACIL has adopted a number of procedures we believe
could minimize overspending on the waiver.
These procedures are agreed to by our members. KACIL has recommended to
SRS that they incorporate these as rules for the waiver. We believe that SRS must be the monitor of
the waiver, and that the rules must apply equally to all providers. To date they have not adopted them. They include:
1. Consumer/Customer
information:
The
signed Consumer Choice form shall be notification of the Consumer’s/Customer’s desire
to change Independent Living Counselor Provider Agencies. Copies of Consumer
Service
record items included in transfer documentation shall be established by the CIL
who generated the information. A signed
release will be signed at the first contact and release of information for
changing CIL's and discussion with former organization will be established.
(Originals
shall be retained by the CIL, which generated the information.)
2. Independent Living
Centers will not deliberately recruit or entice Counselors.
There
will be a 60 day delay between the termination of a CIL number and the onset of
a new number for the same Independent Living Counselor, unless a joint
agreement to waiver this right is signed by the Executive Director or their designee
from each CIL involved. Centers shall
not offer employment on the basis of how many consumers the CIL can bring with
them from the former agency.
3. Re-screening
consumers who have not qualified at another CIL
CIL’s will ask when the consumer has last
been screened. If they have been
re-screened work will stop at this time and communication will begin with that
CIL. CIL’s will not re-screen a consumer who has been denied services from
another Independent Living Center unless one of the following conditions has
occurred:
A.
There has been a change in Health Status since most recent UAI and the consumer
has requested a re-assessment.
B.
The appeal process has been completed with current CIL.
C.
The current CIL requests the transfer.
D.
SRS requests the re-assessment.
4. CIL’s agree not to
complete a Worksheet or assessment of a consumer currently being provided
services through another agency for the purpose of seeing if the consumer will
qualify for more hours through or CIL.
Members
will not divulge scoring or assessment results. Centers will not tell someone
how to score higher on the assessment.
Workers will share information and if there is a disagreement Directors
may need to get involved.
5. CILs agree not to bill for Self-Directed
attendant care at an average that exceeds 12.00/hour for non-medical care.
As
you can see our last recommendation was deleted. The reason is because SRS would not implement it system wide.
Without that assurance, then consumers will just go with companies that charge
a higher rate, and no money will be saved.
In
addition to these recommendations, KACIL would ask that you request an update
from SRS and department on aging regarding allowing people who turn 65 to
remain on the Physical Disability Waiver.
The Secretaries of both departments assured the Chairs of both the House
Appropriations subcommittee and the Senate Ways and Means Committee that they
could accomplish this task. To our
knowledge nothing has occurred.
Thank
you for you time and attention. I would
be happy to stand for questions.