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Tuesday, September 13, 2005

Autism, Education and Help from Uncle Sam

My husband and I are the proud parents of a wonderful eight your old boy with severe autism. He functions at the level of a 15 to 18 month old. Recently, I was asked why I should expect the government to provide aid in the form of Special Education and Medicaid. The question was posed by a person who philosophically opposes any intervention by the government. This person believes that any assistance should come from family, friends, community groups, religious institutions and charities. Other than the fact that by law the school is required to provide a Free and Appropriate Public Education (FAPE) to all children, we have gone through all of these resources.

I don’t believe this person has ever spent any real length of time in a household with a severely disabled child. I found his remarks extremely naive, but the all too common viewpoint of one who has never walked in the shoes of a family with autism. His comment that people reach out to the government first to solve their problems, rather than relying on other resources, angered me. But then I realized he needed an education. As each parent’s journey is different, I can only give you personal experience – our story.

Prior to our son’s diagnosis, we were the typical middle income family, two wage earners with two children in daycare. Although I suspected autism at 18 months, it took the medical doctors over a year to acknowledge and confirm the diagnosis. During this time, the school districts evaluation indicated a pervasive developmental delay and they offered services. They also recommended we contact the state, as (off the record) they felt our son was severely autistic and would be permanently disabled.

At first we were reluctant to allow a social worker into our lives. Being new to autism, I said, “We don’t need that!” I felt social workers were only there for children whose families were in crisis where harm could come to the child. Why would we need a social worker? As our son continued to slip away from us and his behaviors were increasingly difficult, I changed my mind and got on an intake list.

We were assigned to a social worker in the birth to three unit who said, “Why are you worried about the intake process now? Your son is two and a half and will need to move into the adult division in six months. It’s not worth my time to do the paperwork. These children never improve.”

After a letter to his supervisor, we were re-assigned to another, very caring, social worker. This social worker not only completed paperwork, but came armed with information on advocacy groups, schools and their requirements under IDEA, lists of doctors, therapists and treatment centers and options on how to pay for them with a combination of private insurance and state funds, and respite services. She explained the many options available for the different government programs and waivers, what we needed to do in order to get services, what additional evaluations needed to be made, etc. She was a godsend of information and how the governmental processes worked. You see, she had a disabled child herself and had been in the same place we were once. Our initial assessment figured that we needed 26 hours of help to keep the 24/7 supervision our son needed and to do the additional tasks related to his disability.

Shortly before our son’s third birthday, there was an incident of poop smearing at the daycare. This is something very common with autistic children, but rarely talked about. In order to clean him off, this large national day care chain, hung him upside down by the ankles and used a cold water hose over a janitor’s sink to clean him. He was so traumatized by the event that he did not have a bowel movement for 5 days.

We removed him from the day care and my husband gave up his job to care for our children. This essentially cut our income in half.

When our son was 2 ½ we enrolled him in the school district’s early childhood program. I was invited to be on one of the school districts focus groups. I left the group permanently after a meeting on the cost of special education where the District Superintendent looked at me and stated to a group of 40 parents that “some people just move here for the great special education services we have.” I had mentioned some of the programs were not working as originally intended and needed some revision. For your information, we had lived in the district for 5 years prior to our son even being born.

We tried working with the school district for two years. As the teachers and administration failed to address our issues (including giving our son foods other than what we supplied because of his severe allergies, instead of the snacks they provided or treats provided for other children, refusal to provide a one on one aide for Kindergarten, etc.), we decided an intensive in-home program would be a better place for our son. In-home services are supposed to be available when they are in the least restrictive environment for the child, but we were denied by the school district.

Please note that in order to set up the initial services with the school district we had eight one and a half hour meetings in the first six months. The number of meetings called by the school district never diminished. Each time there was a problem or a meeting, I was required to take off of work to attend. In the end, instead of disagreeing with the school district, going through appeals processes, and potential lawsuit for appropriate services, we just gave up on the school district and decided to home school our child. There are some parents that do this, although I can also see the point of those parents that go through the appeals process and end up suing for appropriate services. Many of these parents do not have the money or ability to have one parent stay home to provide schooling for their children. And according to the law, we should not have to.

Parents should rely on family. We are transplants to our state and our biological families are at least 5 hours away. My parents are deceased as well as my father-in-law. My brother comes and visits while he is on layoff in December or January and makes sure that my husband and I get a night out together, as the strain of autism on families has made the divorce rate among families close to 90%. With respite provided through the Medicaid waiver, we have managed to increase that to three times per year. Other relatives either cannot afford to visit to help out or are too uncomfortable to visit us with an autistic child. Because of the destruction our son can cause, he is not welcome in many of our relatives homes.

Parents should rely on friends. The response by friends with neuro-typical families has been abysmal at best. We are avoided by these friends because autism makes them uncomfortable. People we grew up with, friends of 30+ years, suddenly are too busy to visit, make excuses, etc. After a year or two, you get the hint and develop new friendships, with parents of other autistic kids. Are they in any better position to help us? I don’t think so.

Parents should rely on community groups or religious institutions. When we were first starting on this journey we advertised and spoke to priests and congregations of 4 churches, asking for volunteers to help us out. From four large parishes (800 families + each), we received a response from only one person that was willing to give us one hour per week for two and ½ years. She is still a friend of ours, but can no longer devote time to our son. After 1 year of requesting help, the churches no longer allowed us to post on their bulletin boards, as this was “old news.”

Parents should rely on charities. Which charity would you suggest? Because of our son’s extremely low level of functioning and need for 24/7 supervision, social workers have determined that we as a family now need at least 42 hours of help per week to care for him. At age eight, our son is still in diapers; he can only communicate his needs by taking you to what he needs and with two or three words; he has temper tantrums than include biting, hitting, scratching and pinching. He communicates at the level of a one year old. Tell me who will volunteer for a job like that? With 1 in 166 kids needing this level of care, perhaps for the rest of their lives, what charity is going to supply this?

Parents should not depend on government resources. I ask you then – what is the answer to this crisis? Each of these kids cost over $2,000,000 in their lifetimes just to care for them. As severely as our son is affected, this number could climb to $5,000,000. Most parents have had to give up a job in order to provide care. As the children get bigger and older, and the parents get older, get sick and die, who will care for them?

The majority of parents I know have already tried and tapped as much as they can of the resources of family, friends, community groups and charities. My challenge to this man and anyone else who feels as he does is to come up with a truly viable alternative for these kids and their families before saying the government should not be the answer. Are you willing to give one to two hours a week for the rest of your life to help care for a child with autism?

Posted by Jane

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