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Here's the testimony. The Appendixes are not attached here for reasons of
length. Appendix one was a list of the MDS numbers for folks wanting out
from all the states represented on the Health Subcommittee. Appendix 2 was
a summary of testimony given in Nashville TN (printed in Incitement);
Appendix 3 was the list of CCA supporters -- all 700! We picked up a few
more at the hearing so we're updating that list before we send it out again.
*********
Good Morning. I am Stephanie Thomas, a National Organizer for the
grassroots disability rights organization ADAPT. I appreciate the
opportunity to speak to you today.
Over 17 years ago the Americans with Disabilities Act was signed into law.
The disability community celebrated, but as we celebrated we realized that
there were members of our community who were being left behind. Stuck in
nursing homes and other institutions, they had neither liberty nor pursuit
of happiness; they were virtual prisoners of a system that basically uses
them as a cash crop to draw down dollars for others to enjoy. Many of the
members of the group I represent, ADAPT, have themselves been trapped in
nursing homes and other institutions and had to fight their way out to live
in the community. Many of the rest of us see this bleak picture as our
future, a future that haunts us every day.
We have listened to our friends who have lived through being
institutionalized against their will. They told us of living in an 8' by 8'
room with another person - not of their choosing, being told when to get up,
when to go to bed, what and when to eat. We have gone to visit them and
been told they can not leave the building, that we cannot go to see them
because we raise up their hopes. We have heard them explain how "your life
is not your own." We have heard them say "I would rather die than go back."
I have never in my life heard someone say, "I am looking forward to moving
into a nursing home." We know of children born with disabilities who have
been forced away from their families into institutional placements because
this was the only "support" option available to their families; children
belong in families, not in institutions. Being institutionalized by one's
own choice is one thing, being trapped there because you have no
alternatives is something very different.
According to CMS' own numbers, nationally over 300,000 people, in nursing
homes alone, have expressed a preference for home and community services,
yet they are stuck inside - unable to connect with any community options
that might exist. 8,787 are from NJ, 5,762 from GA.[1] This does not even
count those trapped in other kinds of institutions, and those in the
community scraping by as they wait year after year to move up a waiting
list. What I want to talk to you about today is a way to give those people
choices, and help the states and Federal government at the same time. Why do
we invest so much to keep people locked away?
In 2005 ADAPT held a hearing in Nashville Tennessee and invited people who
had previously been institutionalized to come and testify. People flocked
from across the nation to give testimony, and the hearing lasted over six
hours. You have all been given a DVD which summarizes what was said. [2]
People continue to have to move out of state - away from family and
friends - to be free. They fight brain washing and intimidation. They
believe in themselves beyond what all around them believe, in spite of the
doubt and oppression from the current service system. And these are the
lucky ones. Those who got out did not "get better" from their disabilities,
they simply got out - and now live in the community with attendant services
and supports.
But I am not here to talk about how awful nursing homes or other
institutions are. I am here to urge you to take action to give people a
real choice in long term care, to pass Representative Danny Davis and John
Shimkus' bill HR 1621 The Community Choice Act, CCA, and to squarely address
the institutional bias in Medicaid long term care.
Medicaid has helped millions of people with disabilities of all ages; it has
saved people from alms houses and even death. It has played a vital role in
assisting people to achieve independence, dignity and health. But it has
done this with its hands tied behind its back. The glaring problem of
institutional bias grows more pronounced every day as the awareness and
values of our nation change, as the medical and scientific breakthroughs
promise more independence and autonomy for children, adults and seniors with
significant disabilities - yet Medicaid stays so wed to the institutional
mode. Even Money Follows the Person, an important new demonstration program
funded in the DRA, requires that the person must be in an institution to get
out and receive services.
Our current system is backwards. The institutional bias has led to a system
wherein the institutional service is mandated, and the community is
optional; where 67% of the Medicaid long term care funds go to the
institutions and just 33% are left for community services, despite the fact
that there are long waiting lists - sometimes as long as 10 years - for
community services. Ironically, these same community services cost only
about 2/3 of their institutional equivalent. We could be serving 3 people
for every 2 we are serving now, and doing it more humanely.
Services are fragmented, based on disease categories and age, instead of on
functional need. If you have a traumatic brain injury at the age of 18 you
may be eligible for extensive support services, but if you have that same
injury six years later you are out of luck. If you have a spinal cord
injury, a boutique program may cover your needs, but if you have Multiple
Sclerosis and need the exact same tasks done your only option may be Villa
Siesta Nursing Facility. It makes absolutely no sense, unless you are into
Byzantine policy history, and even then .
We hear about fear of the "woodwork effect," an insulting term that actually
refers to unmet need of real live human beings. We are not cockroaches and
this is not pest control. Let's look at the reality of this issue: People
eligible for the Community Choice Act are people who are currently meeting
the income and medical necessity requirements of nursing home or other
institutional services. They are people with significant disabilities.
Without any services they will eventually endanger their health and wind up
using much more costly medical services: going without eating, staying in
one position for too long, or consistently urinating or defecating on
yourself leads to serious problems like malnutrition, bedsores, and worse.
Getting by with no support services is not an option. Forcing people to get
by on nothing is not good policy and does not solve the money issue in the
long run.
Many states would like to even the playing field, but when the Federal
Government says you must fund nursing homes -- and if you want you can fund
these other community services, States are going to be darn sure the finite
dollars they get go to covering the mandated programs first -- and community
waiting lists will grow.
We even believe the Community Choice Act would help to improve the services
in nursing homes and other institutions because it would give them real
competition. If people knew they could go somewhere else, like their own
home, nursing homes and other institutions would have to provide an option
people would freely choose.
Over 700 national state and local organizations have signed on supporting
the Community Choice Act, from the American Medical Association to the
National Council on Independent Living; from the United States Conference of
Catholic Bishops, and Service Employees International Union to the NAACP and
NOW; from the Oglala Sioux Nation to the Christopher and Dana Reeve
Foundation and Not Dead Yet. I could go on and on, but the list is included
with my written testimony.
WHAT THE COMMUNITY CHOICE ACT, HR 1621, DOES
This bill is based on a very simple concept. By reforming Title XIX of the
Social Security Act (Medicaid) it takes a huge step toward ending the
institutional bias. It makes an existing mandated service more flexible, to
meet the needs of those who are currently eligible for its services. The
Community Choice Act allows individuals eligible for services in a Nursing
Facility, Intermediate Care Facility for the Mentally Retarded (ICF-MR), or
Institutions for Mental Disease (IMD) the opportunity to choose instead a
new alternative, "Community-based Attendant Services and Supports." It
doesn't force anyone to move out, as some have claimed. It simply gives
people a choice.
In addition, by providing an enhanced match and grants before October 2011
when the benefit becomes permanent, the Community Choice Act offers states
financial assistance to reform their long term service and support system to
provide services in the most integrated setting. This is already beginning
to happen but in an ad-hoc, piecemeal basis, and often people must be in
institutions in order to choose community services.
Specifically what does this bill do?
It provides community-based attendant services and supports that include
assistance with:
* activities of daily living (eating, toileting, grooming, dressing,
bathing, transferring),
* instrumental activities of daily living (meal planning and preparation,
managing finances, shopping, household chores, phoning, participating in the
community),
* and health-related functions.
CCA includes hands-on assistance, supervision and/or cueing (like reminding
someone), as well as help to learn, keep and enhance skills to accomplish
such activities.
It requires services be provided in the most integrated setting appropriate
to the needs of the individual.
CCA provides Community-based Attendant Services and Supports that are:
* based on functional need, rather than diagnosis or age;
* provided in home or community settings like -- school, work, recreation or
religious facility;
* selected, managed and controlled by the consumer of the services;
* supplemented with backup and emergency attendant services;
* furnished according to a service plan agreed to by the consumer;
and that include voluntary training on selecting, managing and dismissing
attendants.
This bill allows consumers to choose among various service delivery models
including vouchers, direct cash payments, fiscal agents and agency
providers. All models are required to be consumer controlled and comply with
federal and state labor laws.
For consumers who are not able to direct their own care independently, the
Community Choice Act allows for an individual's representative to be
authorized by the consumer to assist. A representative might be a friend,
family member, guardian, or advocate.
It allows health-related functions or tasks to be assigned to, delegated to,
or performed by unlicensed personal attendants, according to state laws.
It covers individuals' transition costs from a nursing facility, ICF-MR or
IMD to a home
setting, for example: rent and utility deposits, bedding, basic kitchen
supplies and other
necessities required for the transition.
CCA serves individuals with incomes above the current institutional income
limitation -- if a state chooses to waive this limitation to enhance
employment potential.
In addition, CCA provides for quality assurance programs which promote
consumer control and satisfaction.
The bill also provides a maintenance of effort requirement so that states
can not diminish more enriched programs already being provided.
CCA allows enhanced match (up to 90% Federal funding) for individuals whose
costs exceed 150% of average nursing home costs. This protects against
discrimination based on severity of disability, so people with more
significant disabilities who require more services can still receive
services on the community.
For the first five years (2007 through 2011) after which the services become
permanent, CCA provides enhanced matches (10% more federal funds each) for
states which:
* begin planning activities for changing their long term care systems,
and/or
* include Community-based Attendant Services and Supports in their Medicaid
State Plan.
And, in the area of systems change:
CCA provides grants for Systems Change Initiatives to help the states
transition from their current institutionally dominated service systems to
ones more focused on community based services and supports, guided by a
Consumer Task Force.
It also calls for national 5 -10 year demonstration project, in 5 states, to
enhance coordination of services for individuals dually eligible for
Medicaid AND Medicare.
CONCLUSION
Ten years ago I and hundreds of other members of the disability community
sat in the audience of this committee for a similar bill called MiCASSA.
Mike Auberger and Justin Dart Jr. among others, testified to this Committee
[several of you were here at that time too] about the urgent need to end the
institutional bias in our long term care system. At that time the
Congressional Budget Office gave the bill a fiscal note that included costs
for people who are actually not eligible for the bill and services that are
not included in this bill. Since then, the University of California at San
Francisco has done a statistically valid and peer reviewed re-calculation of
the cost and found it would be $1.4 to $3.7 billion dollars, a fraction of
the original, erroneous CBO scoring.
In those past 10 years there has been a rising frustration as Congress
refuses to act on this critical issue.
For the women on this committee, and the women who staff this committee and
it's members -- take heed. The vast majority of people in nursing homes are
women over the age of 65, the vast majority of the underpaid direct care
workers are women, and the vast majority of women who are providing long
term care to family and friends for "free" are women. Is this issue swept
so completely under the rug because of this? Who can say? What we can say
is that most of you, men and women alike, will have to face this issue in
the near future from one of these angles - a recipient of personal care
services, a family provider, or through paid service provision.
I faced it when my father-in-law came to live with my husband and me. A
diabetic who had a stroke, he stubbed his toe and soon had to have first
that leg amputated and then the other. His eyesight was going and so was
his memory of things like whether he left the stove on. It would have been
so simple for him to go to a nursing home; "professionals" of various ilks
urged us to do it again and again! Despite the fact that my husband and I
both have disabilities, we were able to keep him out of a nursing home, and
living with us - with the help of attendant services. Today however, he
would be on the bottom of an over 40,000-person waiting list and it is
doubtful he would have reached the top before he passed away. I will face
this again as my quadriplegic husband comes to need even a little more
assistance, as my parents get older and -- hopefully last but not least, as
I too age and need more assistance.
America is aging, and as America grays this issue looms larger and larger.
It is not a question of if we will be dealing with long term care, it is a
question of how we will be dealing with it. We must pull our heads out of
the sand and face the issue. Like most monsters under the bed, once we
confront this we will find it is not what we feared.
Long term care insurance may help some people, but for people who are
eligible for the CCA, in other words eligible for Medicaid nursing home and
other institutional services, it is not an option. They can not afford it,
and frankly the community options such insurance offers are often woefully
short of the need - despite the fact that they often offer much more
expansive and expensive institutional services as a "benefit."
Vouchering the services for everyone is not the solution either. As my
friend Doris put it "I don't want to have to become a small business, doing
taxes, recruiting workers and all that, just to be able to get out of bed
and take a bath!" Unlike many who would be eligible for services, Doris
does not have any kind of cognitive disabilities which would make such a
solution even more complex. And it is a lot easier to cut dollars for
vouchers than to slash services for individuals. When Senior and disability
advocates have sought vouchers, it has been as part of the system, not the
entire system. We do not support block grants; we support choice.
Passage of the Community Choice Act would put these service choices in the
hands of the individuals who are affected, not in the hands of a Federal
Bureaucracy which has ratcheted down on spending for Medicaid long term
care, despite the growing need. We are facing a terrible example of this
ratcheting down right now: Even as CMS is encouraging states to assist
people who want out of nursing homes or other institutions to move out (a
good thing!), it has bizarrely decided to cut Case Management Services by
almost 70%. This assistance is vital for people who have lost everything
once they have been institutionalized, who need help getting everything they
need to move out -- from a social security card to an apartment. This
devastating cut shows the lack of understanding of the reality of people's
lives - the distortion in priorities and understanding of what long term
care is all about. You need to reverse this terrible decision on Case
Management and reverse the overall institutional bias in Medicaid. Passing
the Community Choice Act is an important piece in this overall effort.
Thank you for the opportunity to speak today. I would be happy to answer
any questions.
[1] See appendix for complete list. Or go to
www.cms.hhs.gov/MDSPubQIandResRep/
[2] See the ADAPT website www.adapt.org for a transcript of the entire
hearing, or contact me at [EMAIL PROTECTED] Excerpts of the testimony are
attached to my written testimony.
NATIONAL ADAPT MAILING LIST - Adapt Community Choice Act List
http://www.adapt.org
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