IL: Families Fight To Care For Disabled Kids At Home

From NPR (11.8.10):

Families Fight To Care For Disabled Kids At Home

by Joe Shapiro

...Olivia Welter is 20 years old and gets... life-saving medical care through a program provided by Illinois' Medicaid program. But it's a program for children. And when Olivia Welter turns 21, at the stroke of midnight on Nov. 9, she is no longer eligible for that care.

"There's not going to be any magic transformation between Nov. 8 and Nov. 9," says the young woman's mother, Tamara Welter. "She will be the same Olivia, with the same challenges and the same care needs."

There are about 600 children with severe disabilities in Illinois who get care through the same in-home program for "medically-fragile and technology-dependent" children, and thousands in other states around the country...

..."I've had doctors, a couple of doctors, who have questioned a decision about doing something for Olivia, kind of on the basis of: Is she worth it? I've looked them in the eye and said, 'Don't you dare say that to me. Do you have children? What would you do for your child?' I think society can look at a person like Olivia and say, 'What can she contribute?'"

...when she turns 21, the state changes how it measures cost. For an adult, the state says the alternative is no longer a hospital — it's a less expensive nursing home.

The state will pay for the Welters to send her to one, although there are none nearby that would take her.

And even if they sent her to a distant nursing home, John Welter doubts his daughter would get the close attention she needs to stay alive.

"We cannot bear the thought of having Olivia in a home or a care home," he says. "Because we would be afraid that in any ten minutes, her life could be put in danger. Or less — in any three minutes. It would be agonizing, day to day to day."...

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Comments

[Shannessy Mitchell]

First, to the law makers and politicians in the state of Illinois, are you serious? Where are you when your constituents need you? If there has ever been a cause for you to validate, the welfare and quality of life for a young woman, should be near the very top of your priority list. To the state of Illinois, despite the state’s financial crunch, it is your responsibility and duty to ensure that your residents are provided with every opportunity that federal and state laws require. That includes the rights bestowed by the American with Disabilities Act. In this time and era when humanity is struggling to regain a foot hold on the meaning of a quality of life, it is cases like Olivia Welter, that exemplify the nature of human passion.

[Csaba S. Hutoczki]

The dilemma stems from the fundamentally flawed law that when a disabled person like Olivia turns 21, as an adult, she is now suddenly considered eligible for a narrowed spectrum of services. When will Olivia be able to enjoy all or just one of the benefits of what becoming 21 means to millions of temporarily able-bodied young adults? When it comes to the problem of reducing benefits for persons like Olivia just because they turn 21, the very terminology of “adulthood” and its meaning ought to be reevaluated in the precise context that applies.

Besides the biological and physiological definitions of adulthood, there is also a very important and inseparable legal aspect here. According to one of the many similar explanations, adult age is the age “at which a person is liable for their own actions, such as contractual obligations or liability for negligence. In general, a parental duty of support to a child ceases when the child reaches the age of majority.”
‘Liable for their own actions….and …support to a child ceases,’ hmmm...Olivia cannot speak and machines help her breathe, eat, and even cough to be able to clear her lungs. What are the odds that those who made the laws and regulations to decrease the availability of care just because of that magic number 21, really considered cases like Olivia’s?

I hope at least the courts will understand the proper context and use discretion in deciding that entitlements for Olivia or others in a similar situation shall not diminish just because reaching a certain age when their condition and needs remain the same.

[J. Ito-Carver]

Providing a superior quality of life for individuals who are unable to care for themselves should take priority over the cost of care. We live in a civilized society where every person is a person of value and with the right to live a dignified life. Gone are the days of casting aside individuals with disabilities and forcing them to live in institutions. We should support ways to deliver the best possible care to individuals with disabilities, which in most cases, is having the choice of home based care where their quality of life will be much better. We need to advocate for changes to Medicaid that will provide home health care or a choice of caregiver and care location. People should not be pressured into living in an institutional setting. We need to support and encourage our Congress members to support the Community Choice Act to ensure that people with disabilities will have a choice because, ultimately, there is no place like home.

[Magalita Te'o]

This is just terrible!
I just read the full story and listened to the recording of the story.
Just sad.
First of all, I am thankful for President Ronald Reagan! How awesome of what he had implemented within the medicaid program to allow individuals with disablilities to be taken care of in their homes.
There definitely needs to be a low cost option and care available from medicaid for individuals who are consider to be an adult. and in this case, would be someone that is 21 and older.
After lisening to the recording and reading the title, " States are caught between helping families and dealing with medicaid costs"..I mean this is all about MONEY! It just makes me a little mad thinking about that!!!
and then the fact that some nursing homes refuse to take in Olivia..how terrible!
I didn't know there were guidelines that had to be met before a person could be accepted in a nursing home.
I support the change in medicaid that will give individals with disabilities quality care and attention that is needed!