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?

 

A birthday wish for James – Opinion – The Boston Globe

A birthday wish for James – Opinion – The Boston Globe.

This opinion piece in the Boston globe articulates our problem in Massachusetts dealing with funding issues for adults with intellectual disabilities. The young son is turning 21 years old and the friend  quotes the mother: “He has opened our hearts and minds to endless possibilities, but the future is scary. We want so much for him to have a full life with friends, a life that brings him joy and an ability to be a contributor to our community through real work and volunteering. Our vision for James’s future is not so different from other parents, just a lot harder to put together.’’

“To live a life in full, he needs a full commitment from the rest of us. Money is part of it. That’s reality.

My birthday wish for him is a happy and productive life and a world willing to pay more than lip service to help him live it.”

Examining the Unexamined Life: Adults with Autism, Part 2

This post is the second in a series in response to the question of what I think would make a life happy and fulfilling for my autistic daughter, Lily.

Learning and Growth          

Throughout my life, teachers, professors and mentors have always recommended “life long learning.” “Medical School does not stop when you graduate.” People who deal with dementia recommend adult learning to keep brain cells active and formulating new pathways to stave off Alzheimer’s disease, dementia and aging. Elder Hostels, Senior Colleges and Brain Fitness Programs are designed to continue learning and growth in adulthood.

Why then, do adult programs for intellectually and developmentally disabled offer no stimulation and stop all programs designed for learning as soon as the individual leaves school and enters the Day Hab?

The primary reason is that attitudes in the current system are that the individual has no capacity for learning and it is a waste of time and money to try to teach them anything.

How much sense does this make? Because a person “turns 22”, do they magically become a different person from that day forward? What programs they were making progress with at age 21 and 364 days no longer work at age 22?

We know that the brain is elastic and plastic and even if damaged by whatever damages these autistic brains, or cerebral palsy brains, or traumatic brain injury brains, can and should be stimulated to grow and learn. The progress may seem slow to outsiders and I suppose there are some individuals who have a disorder that means that they will not progress at all. For most people with autism, though, I would argue that they are learning even when you think they are not even paying attention to you.

The elements of learning and growth MUST be present for Lily to feel happy and fulfilled. At present, after 3 years at the group home of trying to achieve some adequacy of basic needs with only partial and temporary success, I am seeing that no learning can really be expected to take place unless the individual feels safe and cared for and adequate nutrition is provided. The staff must be willing to see Lily as a person capable of learning to have the motivation to teach her anything. She must be motivated to learn and the staff must be trained in patience and perseverance.

Just maintaining skills that Lily learned in school has been a challenge. The first time we visited her after she had moved in to the house, we picked her up for the weekend and the staff person said to us: “Is she a feeder?”

Perplexed, we asked, “What is a feeder?”

The staff person replied, “Well, she won’t eat unless I spoon feed her.”

On graduating from school at age 22, Lily had impeccable table manners and used her utensils better than most Americans. She tied her shoe laces, dressed herself, showered herself and could shave her legs with help. She was able to help prepare meals, do the laundry and clean windows (as well as other house keeping skills), with assistance.

Now, after 3 years of neglect, she eats like a gorilla, steals food from others, uses her hands while eating and licks her plate. When I say to her,” Why are you eating like a gorilla?” she gives me a twisted little smile and picks up her napkin and fork. They no longer ask her to do things independently so she hands me the towel and her shoes to help her when she comes home. She is now, “Princess Lily”.

The 45-year-old son of a friend of mine spoke very little when I met him at age 20. Now, his speech is very much in evidence as he learns the ways he can enjoy music, movies and communication with his new iPad.

Learning new skills improves self-esteem; behavior improves as a result. This leads to better acceptance by the community and more opportunities for community inclusion in volunteer, vocational and recreational situations. A major area of happiness and fulfillment for anyone involves giving purposefully in the community and building relationships. This is no different for Lily. Intellectually disabled individuals were secreted away in  institutions  because of society’s fears and prejudices, not because they wanted to be hidden away.

A life of happiness and fulfillment must include abundant opportunities for learning at all ages and all abilities. I wish for Lily to work on communication skills first and foremost. This is her greatest need.

Happy and Fulfilling Life for a Person with Autism

What makes a happy and fulfilling life for a person with autism? What makes a life fulfilling and happy for a person without autism?

The theme of what it takes to make a happy and fulfilling life is not a new one. When my loyal reader asked what I think would make a happy life for my daughter Lily, I made a list of areas that I consider essential components of life to explore and examine.

  • Basic needs
  • Learning and growth
  • Fun and recreation
  • Joy
  • Spiritual
  • Creative
  • Family and Friends: Relationships

As I have written before in these pages, I am not satisfied with Lily’s adult program. I do not think it meets her needs in any of the above areas. My task, as I see it now, is to examine these areas and develop a program that does meet her needs. I have done similar exercises for my own life at times when I was unhappy or felt unfulfilled. The examination can be fun and very enlightening.

Remember that not getting what you want is sometimes a wonderful stroke of luck. 

—The 14th Dalai Lama

Housing for Adults with Autism

Why is it so difficult to imagine a new way to provide affordable living arrangements for adults with autism and other intellectual disabilities?

Recently, meeting with parents of my daughter’s group home house-mates, I heard many complaints about how things were going; poor quality diet, inadequate supervision, not enough activities individually and not enough group activities. Poor communication headed the list; the staff does not communicate with each other, they do not listen to parents, parent’s calls and emails are not returned, nothing seems to change.

One parent stated what I have heard many times: Compared to all the others, this is the best program, we are very fortunate to have found this agency and a place for our daughter. In general, parents of severely disabled children are very grateful for anyone willing to help care for their children, knowing first hand how challenging the work can be.

Being grateful does not mean we must be complacent. We must continually push for the most basic needs to be addressed; food, clothing, shelter, health. What about happiness? Learning? Community? Growth? We have no time to address these issues when we are always dealing with basic needs. Just because this is “the best there is” doesn’t mean there is no room for improvement.

The current system here in Massachusetts is no doubt better than in other states and countries because of our emphasis on education and our relative financial well-being. Major court decisions forced regulations and changes in the system, moving away from institutions and nursing homes towards community supports and inclusion. The funding for these supports is continually under attack by the legislature in these and previous budget cutting times.

I dream of a different scenario entirely, one that is supported by many changes in the Affordable Care Act, (aka Obamacare). The new system is based on what the individuals and their families actually need and not what an agency or department needs. Money is spent more wisely and efficiently when the recipients have a say in how the money is spent. The care providers are held accountable by the families and individuals who receive the services and not by the agencies that provide them resulting in less money spent for higher quality services and better outcomes.

I have no difficulty imagining a better way of living for my daughter and I am looking for others who share my dreams. I will struggle against the entrenched cemented antiquated ideas of the current system until I convince enough people that there is a better way. This will be my only legacy when I leave the realm of earth and hopefully others may follow and my daughter will have a happy and fulfilling life when I am gone.

Am I tilting at windmills?