Alex’s Medicaid Story…Carol Meredith’s Testimony:
In May of 2002, our son Alex became eligible for Medicaid because he turned 18, had a significant disability and had no income or assets. After careful consideration, our family determined that we would run the risk of using only Medicaid to pay for our son’s healthcare, and employ the money we were spending on his private health insurance to partially cover the plethora of long-term care needs he had that Medicaid did not cover under Colorado’s State Plan. Alex is affected by autism. The place he occupies on the spectrum is anywhere from severe to moderate, depending upon the day or hour or minute. His needs are very unpredictable, but much of the time, he is a danger to himself and others. Sometimes he is “with us,” and some-times he isn’t. This isn’t a big deal, except when he is crossing the street, or riding the bus, or brushing his teeth, or making a transaction at the grocery store or…
In 2002, Alex also became eligible for Home- and Community-Based Medicaid Waiver programs. The only waiver he could access was the Elderly, Blind, or Disabled waiver, because it didn’t have a waiting list, and it was perfect at the time—he qualified for 3 hours of care per-day. Since he was still in school for 6 hours a day, both of his parents could work full-time without having to pick him up at 2:30 or 3:00 and take him back to work with one of us. We had tried leaving him alone for those 3 hours, but after he was sexually abused, had a couple of run-ins with law-enforcement, and harassed people at the bank when they wouldn’t let him over-draw his bank account, we gave up. It was clear that he wasn’t safe without constant supervision and support.
When Alex turned 21 and the public schools no longer had a requirement to care for him, the trouble really began. John (his father) started working fewer hours, and we tried our best to tag-team (the minute one of us got home, the other left for work). The situation was exhausting and not sustainable; he required too much support. During this time, Alex was extremely violent: He hit Carol (his mother) daily and repeatedly for various violations of “his rules;” he got into fights with John periodically; the drywall-repair guy became our best friend, because Alex punched his fist through walls on a regular basis; he broke a bone in his hand; he screamed and hit himself in the head, hip and chest multiple times each day; he looked like he’d been in a boxing match—there were bruises everywhere. Our lives were a nightmare.
We asked for emergency Supported Living Services, which was a waiver targeted to support people with developmental disabilities. He was granted a resource and we tried to make that level of support work for 4 years. It was better—especially after we formally appealed for a higher level of service—but it wasn’t enough; we were walking zombies. We kept him safe, but his quality of life was poor.
Then, in 2008, the Colorado legislature allocated some extra funds to the Residential/Comprehensive waiver (HCBS-DD). Because Alex was a danger to himself and others, he qualified for an emergency resource. Luckily, Carol had put him on a waiting list for Section 8 housing, and a miracle occurred—he got off both waiting lists within a matter of weeks. Carol had worked for a local chapter of The Arc for several years, so we knew about person-centered planning and began looking for a service agency that could meet his needs. We looked and we looked and we looked. Then a second miracle occurred: A woman who had supported Alex, part-time, over the years came to us and said she would be willing to live with him and help him transition into adulthood. His family created a service-provider agency (sometimes called a micro-board) and found a condominium to rent. In November of 2008, Alex moved into his own place and “began” his adult life. The last 3 years have not been a cakewalk. Carol volunteers a considerable amount of her time to administrate the program, and we are barely breaking even—but life is more reasonable now.
Alex has several care-providers who are trained to meet his specific needs, most work part-time so that no one gets burned-out from the behaviors. His day program is carefully managed to meet his needs (so far they have only lost him once), and we have learned that he does better with lots of “down time.” Down time for Alex means music, art and calculators—and precious few people around. It’s a delicate balance between keeping him busy and letting his brain rest.
The Colorado legislature has reduced rates for Medicaid providers by 4.5 percent, and we expect another cut this year. As long as we’re healthy and willing to provide a lot of volunteer time, we can make it work; but if more cuts come, the whole thing could collapse. The string is pulled tight now; if we stretch it any further, it will break… and there are only so many hours in a day, and so much energy in a 60 year-old body. We will do our very best, because we love our son.
But we worry about the future. Our entire family has always been very involved in policy and politics. We always vote, and encourage others to pay attention and to let their voices be heard. The recent conversations about cutting entitlement programs—Social Security and Medicaid—are terrifying. Our family is trying to plan for Alex’s future. We, more than likely, will not outlive him. When we are gone or become so disabled that we’re no longer able to manage his life, Alex’s older brother will willingly take the lead.
We have been working to find people who are Alex’s age to volunteer to support his brother in running the micro-board when the time comes, but if Medicaid is cut significantly, everything we’ve worked to put in place will fail. We are scared.
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