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.”

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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.

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?