Autism and Medicaid: No Room for Debate

 

Did anyone watch the Obama/Romney debate last night? None of my close friends did, probably because they already are among the “decided”.  See the complete video and read the transcript Here.

If you watched, and if you are as obsessed with autism as I am, then you immediately noticed the President’s reference to Medicaid and families with autism.

As I indicated before, when you talk about shifting Medicaid to states, we’re talking about potentially a — a 30 — a 30 percent cut in Medicaid over time. Now, you know, that may not seem like a big deal when it just is — you know, numbers on a sheet of paper, but if we’re talking about a family who’s got an autistic kid and is depending on that Medicaid, that’s a big problem. And governors are creative. There’s no doubt about it. But they’re not creative enough to make up for 30 percent of revenue on something like Medicaid. What ends up happening is some people end up not getting help.

If you are anything like me, you probably did not know that the majority of expenses for the long-term care of the disabled comes from Medicaid.

You probably thought Medicaid was just health insurance for the poor.

Perhaps you thought wealthy states, such as Massachusetts, paid for the care of disabled citizens because of high moral values and a commitment to caring for the most unfortunate of unfortunates.

Medicaid, (Mass Health in Massachusetts), pays for health care for the poor and treatment of autism for children certainly comes under that heading.

For my adult autistic daughter, over 60% of the cost of her day program is funded by Medicaid.  Her home is paid for by a combination of Medicaid and her SSI (Supplemental Security Income) check.

Decades ago now, the Medicaid Waiver was instituted to encourage the movement of disabled individuals out of institutions and nursing homes into more inclusive residential settings in the community.  This allows for my daughter and others like her to live in group homes instead of outmoded and often cruel state hospitals.

Preparing to go to a new home.

In other states, movement away from institutionalization has been slow. This story here from the NY Times narrates the transition for one man in Georgia. In Massachusetts where we live  a few families have resisted moving their children and they remain in the institution where they have lived most of their lives, at great expense to the commonwealth.

Even in Massachusetts there are yearly budget battles where well-meaning legislators and the governor try to parse out dwindling funds in the most humane way possible. Direct care staff did not receive pay increases over many years and family support services to those individuals who stay in their homes are continually under attack.

Imagine a scenario where each state is entirely allowed to decide what to do with all of the money.  As it is, the dollars do not go far enough and states move money around creatively to fill their own needs. Who do you think is usually on the bottom of the pile, mostly unable to speak for themselves?

Would some states choose to fund only home care? How many more hurdles would they put in place for desperate families to stumble over? Would some leave the majority of the financial burden to “faith-based” charitable organizations?

I have never understood why in some people’s minds it is ok to let some Americans be more equal than others. Why shouldn’t the intellectually disabled adults in Georgia or Maine have the same opportunities as they would in Massachusetts? Why have a United States if you don’t want to share?

 

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Examining the unexamined life of an adult with autism: Part 1

This is the first in a series of posts examining the question of what I think might lead to a happy and fulfilling life for my adult autistic daughter, Lily.

The first and most essential basis for a happy life is that ones basic needs of food and water, shelter and warmth, health and safety should be adequately met. Some might argue that these are Human Rights and I think we would agree that they are at least American Rights. (For some reason Republicans are now balking at the idea that Health is a human right but this is relatively new. Richard Nixon practically invented Health Care Reform).

Because Lily has little sense of self-protection or awareness of danger, she needs people who care about her to watch over her at all times and they need to be trained and vigilant. They must help her prepare food and must be trained in adequate nutrition on a small food budget and how to prepare foods safely. The staff help her care for her house and keep it clean. They drive her to and fro in a van and take her into the community. They keep her safe from harm and keep her from harming herself.

Staff who work with Lily must also be watchful and aware of subtle changes in behavior that might indicate a medical problem and be active in searching out the cause.  New “behavior” is not just a “behavior”; but, might indicate a physical or emotional problem. They must take her to the appropriate health care provider for evaluation, (providing they can find one willing to care for a nonverbal autistic person on Medicaid).

I think basic needs must be met first before expanding upon the other areas of life that enhance happiness and fulfillment. Maybe some ascetics and monks can claim happiness and fulfillment on an empty belly, but not most and not my Lily.

There are adult persons with autism who need less support in these areas of  basic need but they might still need help for a number of years managing life in a more independent living arrangement.

Unfortunately, when communities and states need to cut budgets for social services because the tax rate is so low, lower than it has ever been in this country, too low to maintain our standards of living, too low to provide for basic needs for the elderly and disabled, the already low wages paid to direct care workers in these support service industries are so low that the quality of direct care workers suffers.

I am dealing with these issues of poor quality staff and unmet basic needs every day now. Although it is frustrating that Lily is not being challenged to learn skills or even maintain skills, the more pressing problems are adequate nutrition and safety.

Why does our society now value keeping money in the pockets of the rich  over basic human rights for the disabled, the elderly and the very, very poor?