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Colorado Quarterly Magazine 

"Rewriting the Myths, Redefining the Realities"

 

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Confessions of a Crip Lobbyist


By Julie Reiskin

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

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