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IN THIS ISSUE:

• Still time to act! State school interim committee action alert.
• Feature story: Charlie Jurek’s key to the good life.
• DPC joins the effort to eliminate 24-month Medicare rule.

 

Editor’s Note: One of the biggest myths about people who live in state schools is they are incapable of being safe, healthy and productive in the community. This month we bring you the story of Charlie Jurek, the first in an occasional series of stories about people whose lives belie that myth.

Community Living: Charlie Jurek’s Key to the Good Life

When asked what he likes best about living in his own apartment, Charlie Jurek doesn't hesitate. He quickly produces the ring that holds the key to his room. It’s the key that allows Charlie to decide if and when someone else enters his private space. It represents a life of choice, control and independence—a life far different than he might have imagined during the 35 years he lived in a state school.

Charlie has an intellectual disability and cerebral palsy. In 1957, when he was 19 years old, his adoptive mom placed him in the Travis State School. He transferred to the San Antonio State School when it opened in the 1970s. He lived there until he was 54.

Now 69, Charlie has enjoyed life in the community for nearly 15 years. His friend and guardian, Judith Laufer, doesn’t have information about how he moved out of the state school. The timing suggests he was part of the first big wave of people identified as good candidates for community integration back when the concept was relatively new in Texas. Perhaps a case worker looked beyond his communication difficulties and recognized his many abilities, she speculates.

At first, Charlie lived in a group home and worked in a sheltered workshop, both operated by the same organization. While it was better than the state school, Charlie says he didn’t like sheltered employment. “Sit and do nothing,” he says. “Don’t pay enough.”

Charlie liked his next job a lot better. He worked at a Burger King close to the apartment he shared with two roommates, including Judith’s brother, David. It paid more than the sheltered workshop, though he says he still would have liked to make more money. He worked there for five years, until the restaurant closed in 2003. By then, he’d reached retirement age and didn’t look for another job.

But that doesn’t mean he’s sitting around with nothing to do. Charlie’s calendar is filled with a wide variety of volunteer and social activities. He helps sort groceries for a local food bank. He’s the parliamentarian for the San Antonio League of Self Advocates (SALSA). He’s the stage manager for the Playmakers, a drama group comprised of people with developmental disabilities. He goes to church regularly. He enjoys bowling with friends and going out for coffee and a sweet treat.

After a number of years on the waiting list, Charlie is finally getting services through the Home and Community-based Services (HCS) waiver. He gets daily assistance from support staff to do the things he chooses to do. He likes the variety in his life now, compared to the state school where his choices were limited. “Go to dorm. Go to workshop,” he recalls.

Charlie and his roommate share an apartment and have developed a comfortable routine. Charlie makes the coffee every morning, helps with the grocery shopping and washes dishes. His roommate does some of the cooking, including the pancakes they enjoy on the weekends.

Charlie’s adoptive mom died a number of years ago, and he has no other family. Judith and David count him part of their family. He spends a lot of time in their homes, especially on birthdays and holidays. He likes going out for Mexican food and margaritas, and he makes special mention of one of his favorite traditions—champagne on New Year’s Eve.

There are few SALSA members who continue to live in the San Antonio State School. Charlie sees them occasionally when the group meets there. When asked if he would want to live at the state school again, he is quick with an emphatic “No!” He is happy where he is; in his apartment, in the community, with his friends—and with his own key.

DPC joins the effort to eliminate 24-month Medicare rule

In 1972, Congress changed the Medicare program, created seven years earlier, to allow Americans with a work history to qualify for Medicare health insurance benefits if they become disabled—even if they haven’t reached 65, the age at which people are automatically eligible. This coverage, along with the Social Security Disability Insurance (SSDI) cash benefit, is critically important to people who can’t work due to serious illness or injury.

In order to get the Medicare coverage, a person must first qualify for SSDI through a rigorous five-month eligibility process. Then, there is a mandatory 24-month wait between the time a SSDI benefits start and Medicare coverage can begin. People who are disabled due to injury or serious illnesses such as multiple sclerosis, cancer or heart disease must wait more than two full years before they can access the Medicare health insurance their working wages paid for. The wait is often devastating—even deadly—for people without insurance or the funds to pay for medical services they need.

Without a lot of fanfare, the 80^th Texas Legislature passed House Concurrent Resolution (HCR) 35, authored by Rep. Eddie Rodriguez of Austin, urging Congress to pass a law to eliminate the 24-month Medicare waiting period for SSDI participants. Texas is the first state to pass such a resolution. Last week, the secretary of state’s office forwarded the resolution to the U.S. president, vice president, speaker of the house and members of the Texas Congressional delegation, requesting that it be entered in the Congressional Record.

Meanwhile, a work group comprised of legislative staff members and disability advocacy organizations is joining forces to raise awareness of the problem—and the effort to correct it. The DPC is pleased to be part of the team and, among other things, is contributing assistance with the publicity strategy and materials.

We’ll have a lot more information in future Action Updates. Meanwhile, check out the full text of the resolution, which includes a lot of good statistics which illustrate the depth of the 24-month wait problem.

Let your friends know about the Texas Action Center: Tell-a-friend!

 

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