QUEST Volume 11, Number 2, MARCH/APRIL 2004

 

Dubious Victory

by Karen Wheeler

The other evening I saw a television program about kangaroos.

	Karen Wheeler (right) with friend Veronica Gonzalo

Australian farmers who believed kangaroos were competing for food needed by livestock would destroy them at every opportunity. Locals fought for the rights of the marsupials by creating petitions, conducting protests, and taking in the deserted babies and raising them to be set free.

Dont get me wrong I love animals. Some animals I like more than people.

But I have to wonder why the same compassion the kangaroos received isnt applied to human beings. If our society only knew how people with disabilities are really treated, and how hard-earned tax dollars are being wasted on keeping people in long-term care facilities, I could only hope a similar commitment would be revealed.

Snip, Snip

Every state government has a budget it must conform to, and sometimes cuts in funding are necessary. Unfortunately these cuts often hurt people who rely on the funded programs for their very lives.

I have spinal muscular atrophy, and I need help with virtually every aspect of my daily life. I depend on Medicaid for medical care and in-home care.

Almost every year, the state of Nevada makes sweeping cuts to its Medicaid programs, specifically those that cover personal care for people with disabilities. Every time, I end up in court fighting for my hours of care.

Once I receive a letter of determination saying my hours are being cut, I immediately file for a hearing in front of an administrative judge. After I file my hours cant be reduced until theres been a resolution.

Ive never actually lost an appeal, and the state has never actually won. Whenever I get close to winning they change me into a different program, and my hours of care are restored.

The next year I have to go through it all again. I waste so much time and energy creating documents to appease the state, and it never seems to be enough. Although Ive been approved for a waiver allowing a few more hours of care than the minimum for several years, I have to prove my needs each year.

Last year I received 671/2 hours of care per week, but for 2004 the state said it would reduce those hours to 60. The new assessment form also limits the time that a caregiver will be paid for helping me with dressing, exercising, transferring, eating, light housekeeping, shopping and laundry - by estimating how long it "should" take me to do each of those things.

Each year, the taxpayers pay for the state to go through the same re-evaluation process for me and others with chronic diseases whose needs will either increase or remain unchanged.

Short-Term Fixes vs. Long-Term Care

I have no choice but to appeal. When home care benefits are reduced, some people are forced into institutions, even though they might be able to live on their own with enough care. Yet, as every study has shown, keeping someone in a nursing home for years is far more expensive than the cost of home care.

As my limitations become more pronounced, the thought of being forced into a care facility is a nightmare. Id never receive the care I needed. I have friends whove physically survived rape, theft, and physical and emotional violation in care facilities.

Medicare-dependent people in many states face these battles. Yet in other states, such as Colorado, Florida and Maine, regulations are being updated so beneficiaries can manage their benefits in the ways they choose hiring assistants of their choice and deciding what kind of help they need.

This sensible approach could become the law of the land if Congress ever passes MiCASSA (Medicaid Community Attendant Services and Supports Act). The bill gives beneficiaries more options for long-term care at home or in other community-based settings.

Maintaining

Instead of spending my limited energy trying to retain the help I need, I prefer to focus on maintaining as much ability and independence as possible, so I can continue doing things that give my life meaning especially my watercolor painting and drawing. Besides doing my artwork, Im president of the Vegas Artists Guild and scholarship chairperson for the Nevada Watercolor Society.

Each morning, my friend and caregiver David Calzolari shuts off my alarm and has a quick cigarette and cup of coffee in the garage while I wake up. He then disassembles the pillows he placed around me the night before to keep me in a comfortable position. I use many pillows, an alternating pressure pad and a BiPAP machine through the night.

After rolling me onto my right side, David massages the curve in my spine that gives me the most discomfort. I have severe scoliosis (the side to side curve) and kyphosis (the front to back curve). Sometimes it hurts while Im sitting or lying down, and my only relief is sitting in a full bathtub of hot water.

Before helping me dress, David stretches a back support around my twisted torso and attaches the ends over my stomach. The pressure is sometimes breathtaking and painful. The back support is repositioned after Im sitting up.

I eat slowly because it takes an effort just to get something into my mouth. Sometimes I take a breath and lean forward to meet the fork halfway (the fork handles seem to get shorter and shorter).

If Im not careful with my breathing, food can stick in my throat. I can then perform a weak cough and usually get the food out of my airway. Sometimes I end up hacking for a while along with the runny nose and eyes. It takes a lot of energy to move a crumb.

It often takes me two hours to eat one meal. But the state says I should be able to eat a meal in 45 minutes. The assessment also limits bathroom trips to a total of 30 minutes per day.

Here We Go Again

Im lucky to have David, who lives at my house. He actually gives me care 24 hours a day, seven days a week. He even sleeps with a baby monitor in his room in case I need him during the night or he hears my breathing change.

Thats dedication Id never get in a long-term care facility. David isnt paid for driving me to my meetings and art events, but he cares about my quality of life, and goes far beyond what hes required to do.

After my latest hearing in December, I was once again requested to acquire yet another letter from my doctor stating the facts of my disability and that its a medical necessity that I retain my current hours of care. Once again, one of my doctors kindly provided a letter.

In January, I was granted the waiver. David will still be paid for 671/2 hours a week, but only after we - and the state again spent many days explaining my situation. Id think it would be obvious that my ever-increasing needs will always exceed the maximum amount of time given on their ever-changing assessment forms.

I could easily sit at home, watch television and just say its all too difficult for me, but thats not the kind of person I am. Life can be very tough sometimes, but the severity of the toughness can depend on the attitude of the person.

Ill go through this process as many times as necessary to stay out of an institution. Maybe in my next life Ill come back as a kangaroo.

Karen Wheeler lives in Henderson, Nev., and has artwork in the MDA Art Collection. She invites anyone who wants to discuss state Medicaid regulations to e-mail her at Karen@KarenWheeler.com. Her Web site is www.karenwheeler.com.