"Rewriting the Myths, Redefining the Realities"
Fear, relief, exhaustion, elation, despair, hope.
These emotions have raced through my heart on an almost daily basis
throughout this legislative session. As we all know, Colorado is in
a budget crisis. The budget overshadowed everything else this
legislative session. However, with the very real budget debates and
cuts came many rumors. Some were begotten from fear and
misunderstanding. Others were cruelly started by providers of
services out of pure financial interest and without regard to what
these rumors do to people with disabilities. I have had many, many
calls from people desperate because they believed or were told that
they would lose the support services that kept them free in the
community. For those that have suffered the isolation of
institutionalization there is no greater fear. Even for those of us
lucky enough to have avoided it—the fear always lingers. The good
news is that no services that impact the ability of people with
significant disabilities have been cut or eliminated. The Joint
Budget Committee and other legislative leaders such as
Representative Laurie Clapp did their best to minimize cuts to the
most essential programs.
I will begin with the good news: There were absolutely no cuts to
any HCBS (Home and Community Based Services) waiver programs. The
waiver programs and the already low rates for primary care doctors
were about the only health care services that did not get cut.
Unfortunately, the nursing facilities that continue to occupy over
60% of long-term care dollars did not take any serious cuts either.
The problem here is that the nursing facilities have their rates
guaranteed in state law. Other Medicaid providers have to take cuts
in bad times, but state law prevents the nursing facilities from
taking their fair share. We had hoped to see that protection removed
in this time of financial crisis. However, the nursing facilities
agreed to a provider fee in lieu of a rate cut. They will have to
pay the state a certain dollar amount for each bed. This keeps the
federal reimbursement up, but also keeps their base up and their
rate in state law. The way it works is that they will pay certain
money to the state—but instead of going to the state the money goes
to some private entity that then donates it back to the state. As
explained in a hearing, they must do this so that it does not appear
to the federal government that they are using a “provider tax” to
increase federal reimbursement. Will the federal government look the
other way on this one? We have no idea, but do know that this scheme
is alive and well in other states. The good news is that the
Consumer Directed Attendant Support Program was made permanent and
there is no longer a cap of 150 people. This means that anyone who
otherwise qualifies can apply. For more information on this program
call 303-866-3358 or go to the state website at
www.colorado.gov, then click
on Health Care Policy and Financing under the State Agency section.
There is a link to CDAS.
The In-Home Support Services Program that offers a personal care
option also had a technical problem removed, so that should start
soon. This will enable people who are not ready or willing to do
total self-direction to get some support from an agency (including
24-hour backup), but not have to use certified nurse aides or
nurses. For information on this program call the Boulder Center for
Persons with Disabilities at 303-442-8662. This is a statewide
program, and there are providers other than Boulder, but they can
point you in the right direction. In the final hours of the session
we are hoping to get approval to make this option available for
anyone, not just clients in waivers.
The most moving day of the session for me was the house hearing on
private duty nursing. Cuts were proposed to this program. The
program serves people with disabilities who have extremely severe
medical conditions. The first proposal was to eliminate all services
for adults, and to serve children only for one year. In the Senate,
parents did a great job of getting the one-year provision removed in
exchange for reducing available hours from 20 per day to 16 per day
for children. In the House, Representative Clapp added adults back
onto the program.
The hearing was the most amazing thing I have seen, and it restored
my faith in democracy. I was worried when I saw all of the people
waiting to testify. I tried to get the bill pulled, and was working
myself into a frenzy wanting to control the day to prevent a bad
outcome. I had seen other groups come and be perceived as whiny,
making the representatives with the thankless jobs defensive. When
the hearing began and I shut up the control freak in my head, I was
awed. Representative Clapp made sure that everyone had a turn to
speak. This one bill took more than four hours, unheard of during
budget season. The parents were eloquent and dignified. Not one
spoke of their child as a burden. They all shared the labor of love,
but made it clear that no one can do 24-hour shifts day in and day
out. Siblings testified about how much they loved their brothers and
sisters. They explained that without the private duty nursing they
would witness their family crumble. They shared fears of losing
their beloved siblings. The committee listened with rapt attention.
Within 24 hours Representative Schulteis, one of the most fiscally
conservative legislators around, found money to fully restore the
program. He said to the press, “We will not balance the budget off
the backs of severely disabled children.”
There were numerous attempts to limit access to
prescription drugs for Medicaid clients. Surprisingly, most of these
attempts were launched by AARP—a group one would think would want to
protect access to medication. This is part of a national partisan
political game. The real enemies of those that push for restricted
access are the drug companies. The proposals will not hurt large
corporations, but could kill many of us. Fortunately, we were able
to kill all of those proposals. Medicaid is doing some limited
“utilization review” of prescription drugs. There are some problems
with their methods that we are trying to resolve. If you have
trouble accessing medications in the Medicaid program call the
Colorado Cross-Disability Coalition at 303-839-1775. Yes, the drug
companies make a profit. So do nursing homes, insurance companies,
home health providers and everyone else in the health care industry.
There was a proposal to reduce the income limit for Medicaid
long-term care from 300% of SSI to 250% or 285% of SSI. This never
saw the light of day. Some Medicaid co-payments were raised, but the
JBC rejected a co-payment on home health. Most providers took a cut
in rates.
Community Centered Boards lost a lot of the family support money and
some SLS (Supported Living Services) funds. The good news is that
Developmental Disabilities Services is finally looking at a
self-directed voucher concept for those who may want that choice.
That will save money without hurting clients.
Mental health also took a cut. The Mental Health Centers were
telling clients that they would lose their clubhouses, and support
services. The first thing the mental health providers wanted to cut
was the consumer directed services that really help clients with
serious mental illness. However, that information was false. Each
Mental Health Center has a family and consumer advisory board. These
groups should have a say in how each Center reduces the budget. If
you are not involved with one, get involved. If you have been in the
past and found it a weak group, then show up now in force and make
it stronger. The mental health providers of course tried to get rid
of the mental health ombudsman program. They will keep trying,
meaning we have to come together as a community to keep and
strengthen that program.
Legal immigrants lost Medicaid benefits. The ACLU and private
attorneys tried to fight it, but lost that battle. State funds will
serve existing long-term care clients for the remainder of their
lives (the nursing home fees will pay for this), but no new clients
will get on the program. We will have to find ways to support our
brothers and sisters who are immigrants without Medicaid funds. The
Southwest Affiliate of the Colorado Cross-Disability Coalition is
already helping one person.
The cut that will have the biggest impact on persons with
disabilities outside of the metro area is a significant cut in
county Medicaid transportation. This was cut in all cases except for
people requiring a wheelchair van (and not owning one) and people
requiring out of state travel for a medical purpose. Non-medical
transportation for HCBS has not been cut. Again, as communities we
will have to rally to find replacement for this service. The
possible light at the end of this tunnel is that we have preliminary
information that suggests that the federal government may not allow
the state to do this. Regardless of how that comes out, there will
be limits in transportation for at least awhile.
Did anything happen that did not have to do with the budget? A few
things: The Nurse Aide Practice Act was renewed for another
agonizing decade. We tried to get training that is meaningful to
home care included. We also tried to increase consumer
representation on the board that governs nurse aides. This bill is
not finished with the process and we continue to try. However, the
House sponsor, Representative Totchrop, amended the bill to remove
consumer representation and replace it with representatives of the
nursing home and home health industries. She said that consumers
would just mess up the whole process.
There were several bills on campaign finance reform; one to
implement the Help American Vote Act (subject of another article
someday) and some to deal with initiatives. There was a bill to
increase criminal background checks for those working with
vulnerable persons. There were numerous “tort reform” bills making
it harder for people that are injured to sue. We got involved with
two bills of this nature. One bill would have required a plaintiff
in any case to accept the first offer of settlement or have to pay
all of the costs if they lost. We approached the sponsor,
Representative Weins, and explained civil rights litigation, and the
difference between trying to enforce our rights, and personal injury
cases, where only one person may gain. We explained that there are
no damages in most disability civil rights cases. We shared that
often defendants in civil rights cases would rather give us
(plaintiffs’) money than fix the problem. We sue to fix problems,
not to get rich. The bill was amended to exclude all non-monetary
offers, removing this perverse incentive for defendants.
The other bill was a subject of great controversy within the
disability community. There has been an explosion of personal injury
lawsuits against providers of service for the CCB’s. These suits
have put some good providers out of business, leaving the clients
with nothing. However, people with developmental disabilities are
the most vulnerable, and we must be vigilant about aggressive
punishment of abusers. Providers were beginning to refuse to take
“challenging” clients (a.k.a. clients with behavioral issues),
increasing the risk of institutionalization. The first draft of the
bill made it impossible to sue even when a lawsuit is right.
However, the proponents of the bill, with help from the ARC of
Denver and others, significantly amended the bill. While there is
never a perfect balance, the result is that the new law should stop
the few unscrupulous attorneys from filing frivolous personal injury
lawsuits while enabling people with true damages caused by provider
abuse or neglect to seek redress through the legal system.
There were numerous bills and debates about both health and auto
insurance. Neither issue is finished with ten days remaining.
This session saw the creation of a Lobbying Practices Task Force
that met to address ethical behavior of lobbyists. They welcomed my
input as a volunteer lobbyist and want to include us in future
training. Volunteer lobbyists are now posted on the web. Hopefully
some positive change will come from the final report of that group.
What comes next? The Colorado Cross-Disability Coalition (CCDC) and
many of the Independent Living Centers are planning to hold
community forums during the months of May and June. We will hold
these forums in any community that wants one. The forum will be a
day where we first figure out on a local level what have we lost,
what have we gained, what we never had but desperately need. Out of
a list of strengths and needs we will then prioritize and develop
short term working groups to address the greatest local needs. CCDC
will host a statewide meeting in August, bringing all of the local
groups together to compare notes and plan our statewide agenda for
the next legislative session. If you want to participate in a local
forum please contact CCDC at 303-839-1775. As of this writing only
Denver has a date (June 8), but the remainder will be scheduled
soon. Our August meeting will include training on topics recommended
at the local forums along with an opportunity to dialogue with
policy makers.
Just like the four seasons, we have our own seasons. The winter and
early spring is the actual legislative session. However, we must
spend the late spring and summer assessing our new position and the
late summer and early fall planning both proactive and reactive
strategies. By late fall we must begin to implement our strategies.
We also spend the summer and fall making sure that, when rules are
written from laws already passed, nothing about us is written
without us.
Other states did not fare as well as Colorado. It was not luck that
saved us, but hard work by many of you throughout the state. Rural
communities held Medicaid hearings with their representatives
throughout January and February. People with disabilities and allies
throughout the state made calls to legislators with whom
relationships had been developed before the session so that the
calls were more meaningful. Many shared the deepest personal stories
with legislators so that they could see the impact — the positive
impact — of the programs that they fund. Parents with small children
waited hours, quietly, for the opportunity to participate. People
with disabilities braved early morning frigid weather to get the bus
to the Capital for early morning hearings. Most important, when the
budget crisis began last year, the disability community came
together in a way that I have not seen before. We are a diverse
community. We have diverse organizations. We are a thinking people,
therefore, we do not always agree. But when it comes to freedom and
the very lives of our community, we are united. We made a show of
power and it worked.
We did not complain and tell the Budget Committee not to cut
anything. We offered real proposals, negotiated, and only opposed
what was life and death. We certainly did not win every battle — but
our community based long-term care is in tact, meaning, for now, we
won the war.
Our fight is not over. It will not be over until every person with a
disability in Colorado has the freedom to live outside of an
institution, has the control over the resources (money) for support
services, and is able to enjoy the same opportunities for success
and failure as our non-disabled peers. If you have not been
involved, get involved. The life you save may be your own.
Julie Reiskin is the Executive Director of Colorado Cross-Disability
Coalition. She can be reached at:
655 Broadway Suite775 Denver, CO 80203
303-839-1775 Voice
303-839-0015 TTY
303-839-1782 Fax
1-877-256-5667 Toll Free
Copyright 2002 A&H Publishing Corporation