” Things fall apart; the centre cannot hold;”-William Butler Yeats, The Second Coming
“You can’t make an omelet without breaking eggs.”
” Things fall apart; the centre cannot hold;”-William Butler Yeats, The Second Coming
“You can’t make an omelet without breaking eggs.”
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.
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?
Last month I had the pleasure of attending the symbolic ceremony marking the Penobscot River Restoration Project, the destruction and removal of the Great Works Dam in Old Town, Maine. Now this dam has been breached and those of you who enjoy watching large machines destroy things can watch here.
I grew up near the Penobscot River and back then, in the 1950’s and 60’s, rivers in Maine were barely alive. The Penobscot never froze over in those winter days and did not support fish life. The salmon and sturgeon, the alewives and striped bass, declined almost to the point of extinction.
Over a decade ago, conservation groups, the Penobscot Indian Nation, communities and governments came together and participated in a collaborative effort to restore the health of this river. The water quality had already improved, thanks to clean water laws initially proposed and enacted by legislation begun in the 60’s by the state legislature, including my mother, who was a representative from Orono, Maine.
Now, the goals of these collaborating groups are being realized in the form of actual removal of dams and the building of modern fish diverters and elevators around the dams that will remain. Over one thousand miles of water will be reclaimed by nature; hopefully, returning salmon and alewives will find it a healthy home to spawn and reproduce.
Restoring the health of the river will contribute in many ways to restoring the health of those who live work and play on it, including the Native people, those who fish in the river, in saltwater bays and in the Gulf of Maine, and visitors from away. More fish contributes to more fish, therefore more fishing. Sometimes things are just that simple.
I cannot help but see this as a metaphor for life today and for my efforts to build a new life for my daughter and her peers. We must persevere in the face of entrenched and antiquated ideas about what is possible, collaborating with others even when the groups seem to have opposing priorities. Old and crumbling obstacles must be removed and the natural way restored so that our children, our most fragile and vulnerable resource, be allowed to flourish in a dangerously damaged environment.
Listening to the speeches by the dignitaries at the ceremony, I heard many words matching the phrases I heard at the planning day for autism programs at the agency I have been working with:
As disability advocates, we have much to learn from this example in the conservation community.
My mother would be proud that people working together could achieve so much for this Penobscot River, for Maine and for the health of the environment. I hope that other groups of people can collaborate to achieve their individual goals in a similar manner.
I plan to keep this milestone achievement in my mind as inspiration as I work to move my “Restoration” project forward in the next years: my “Peaceful Revolution”.
It has been difficult to find families who want to work on a new revolutionary way to provide a full life for their adult children with autism, perhaps because we have been looking for adults that are just beginning the transition process. The children are still in school and the parents are satisfied with what they are doing and receiving for services; having worked to get it right, they are making progress and perhaps even seeing the positive changes that can come with maturity and stability.
The nightmare experience of seeing all that progress disappear into the maw that is adult services has not yet occurred.
Last week I attended an invigorating “brainstorming” session about planning the future of the autism programming for the new agency that I am working with for Lily’s new life. I was amazed to be invited and even more astounded that “Families” was the first on everyone’s list of values. So often in my three and a half-year experience with the adult system the parents are ignored or “yessed” in meetings. The attitude is one of “us” and “them”. How refreshing and encouraging to meet this very sincere group that I hope soon to be an even more active member of.
Today, looking out over the shining blue of the bay with the puffy clouds and the dappled sand, I wonder whether the first English, French and Viking settlers to these shores thought about the physical beauty surrounding them as they pulled in their nets and laid out the fish to dry in the sun.
Were they too busy working to survive to be awestruck by the colors of the sunrise after so many days of rain and fog?
Did the wildflowers blowing in the breeze ease the ache of their backs as they gathered wood for the winter and plowed and seeded the garden?
Here in the Northeastern United States, with long, cold winters of bleak landscape and hungry wildlife, we treasure the few short weeks of spring and summer, hoarding days spent fishing, gardening, hiking and sailing, or perhaps simply sitting on a rock, gazing out at the beauty.
We know what man has done to nature as well; we have the contrast of the cities and industrial pollution versus the sea, woods and farms and appreciate all the more what we still have seeing it next to the examples of destruction.
The First People, or Native Americans or Indians or whatever you wish to call them in your culture, appreciated the sustaining value of the natural world around them and protecting it has prominence in their religions and way of life. They knew this truth without need to compare with the absence of nature; it puzzles me sometimes why we seem to need to miss something after it is already gone.
Missing our school experience that treated our daughter as a whole person, and having the experience of seeing her regress under a program that sees her as flawed and broken, to be managed like unwanted refuse, we have become acutely aware of the destruction around us and wish to reclaim and rebuild her world to more closely resemble what we had before.
We will build a new world based on the rights that Americans hold to be self-evident, a revolutionary new world, dedicated to the rights of ALL people to happiness and freedom.
Perhaps we need to look for our families amongst those who have seen the future, instead of those who are have not yet experienced the destruction.
If happiness is the key to life, and that is what we all want from life, how do we design a support system for adults with severe autism that encourages happiness?
First we have to find out what makes an individual person happy.
To do that, the person must have a means of communicating to others what makes them happy.
That is the first goal, to encourage and respect the communication of those that we care for.
Behavior is communication. We must try to see past the unpleasant behavior to what is being communicated by the behavior. Medications mask the behavior and silence communication; that is disrespectful of the attempts of the person to communicate their needs and opinions.
If an adult with severe autism has no reliable means of communication we must help them find ways that work for them or we are not doing our jobs.
Happiness is an “unalienable right” according to the US Declaration of Independence. I think it is time that this right is applied to those of our citizens with intellectual and developmental disabilities.
We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.
When I was just a little girl
I asked my mother, what will I be
Will I be pretty, will I be rich
Here’s what she said to me.
Que Sera, Sera,
Whatever will be, will be
The future’s not ours, to see
Que Sera, Sera
What will be, will be.
On NPR yesterday, Terry Gross on Fresh Air was interviewing Doris Day about this song, saying that she, Terry, had always disliked the song and that she had heard that Doris had hated it also.
My mother used to sing this song to me when I was a small child, around the same time that it was a hit song, in the 1950’s. I loved having my mother sing to me and never thought about the lyrics until I was a teenager and became more socially aware. Then, in the activist 1960’s, “what will be will be” just did not cut it with me.
When my own daughter was small I sang to her, too. The songs that my mother sang came into my head almost automatically. When we received the autism diagnosis, I revisited this song as a way of accepting things as they were, of letting go of my dreams of the perfect little girl and the perfect little life.
Gradually I rejected this song again, in favor of “You are my sunshine” and other more uplifting tunes. (Lily sometimes puts her finger over my mouth to get me to stop singing; my voice is not the best.)
We are now being told that 1 in 88 children will be diagnosed with an Autism Spectrum Disorder by the age of 8.
That is 1 in 54 boys.
That is 1 in 252 girls.
“What will be will be” cannot be our theme song. What should our song be?
Seventh in a series of what I think would make a fulfilling and happy life for my autistic daughter Lily.
Friends and Family
I am trying to find families for a new and exciting home for my daughter. We are planning a home and day program that will meet the specific needs of each individual and lead to a happy life in the community.
Finding compatible parents is the first step because we all will need to be actively involved for this to work. We want to be part of her life and know and like the families of her housemates.
Finding collaborators to provide the services who share the goals and that we feel we can work with is also paramount. We have successfully brought together two groups who are committed to the same goals that we share and an academic center devoted to improving life for adults with autism.
Because there are not many females with autism compared to males, finding compatible house mates has been more difficult. We are planning a mixed male/female house. I am not sure how much it matters to Lily who she lives with because she really bonds with her staff more than with her peers. Maybe if she lived with a young woman who was verbal and they shared the same preferences for activities in the community, perhaps she might make a relationship with a peer.
So far Lily’s female peers have been either not interesting to her or a painful annoyance. One of her current housemates screams high-pitched loud protests when she is anxious, (which is frequently), and Lily does not tolerate that well. In past situations, Lily’s aggressive behavior has disappeared when an offending noise-making female was moved to another house.
This is one of the many reasons we are making our own program; the current Agency refused to listen when we asked them not to put this loud woman in the house with Lily because Lily had already had problems with her at the Day Program. When they refused to change their plans, we asked that Lily and the woman not be in the same group at the Day Program; so far this has not been achieved.
Lily does have friends who are family friends and she can be very social with people that she knows accept her as she is and do not expect her to be like everyone else. Staff who care about her will see the side of her that we see, the caring loving side, not the monster side.
My hope is that when Lily is comfortable in a place with staff who care for her, accept her and meet her needs, she will blossom again and we will have the daughter back that disappeared when she turned 22 and left her school for the big bad adult world.
In the meantime, when she is at home with family and friends who love her and respect her she is generally happy and less anxious. Thank you, family and friends, for being there for her and for us.