Off to Richmond

This afternoon, I am off to Richmond with Jimmy to appear at a public hearing at the General Assembly Building for the Special Advisory Commission on Mandated Health Insurance Benefits on behalf of Senate Bill 1049. This bill would require medical insurers to offer riders of coverage for children under the age of five with developmental delay diagnosis. I am one of four women from Prince William County (I have not met the other three) going to testify. I prepared my testimony and shared it with them and they have use it to address other areas where I was lacking. I am all for them doing something, but a rider probably isn't the way to go. In Kentucky, a rider similiar to this is $500 a month. It's nuts. I am sick of the denials of Kaiser when it comes to Jimmy's care. Even though this bill isn't enough and won't help Jimmy directly, it's nice to feel like I am doing something. I also hope to generate interesting in more sweeping reforms for autism coverage in Virginia. I am pasting my testimony below. Happy reading...

My name is Rachel Kirkland. I am a constituent from Manassas Park, Virginia and a state employee at George Mason University in Fairfax. This young man with me is Jimmy Kirkland. Many people here today are more practiced at speaking on this subject than I am. Many can offer more detailed explanations and opinions of what this bill would or would not do for developmentally delayed children. I think Susan Murray’s written testimony does an excellent job in detailing the issues and concerns around them. I come today to share my experiences and my point of view as a mother and state employee. My son is four years old and was diagnosed with PDD-NOS, a disorder on the autism spectrum, in April 2005, after several years of concerns being expressed to our health providers at Kaiser Permanente. Although Jimmy will never personally benefit from the passage of SB1049, I wanted to come here and give my testimony in hopes that this commission will pass this bill to help children like my son.

I became aware of this legislation as a result of my dispute with my insurance company, Kaiser Permanente. At the time Jimmy was diagnosed by the neurologist from Children’s Hospital in April, she recommended a treatment plan of occupational therapy as well as speech therapy. Our pediatrician concurred with her recommendation and put forward referrals for approval by Kaiser. Kaiser approved a mere twelve sessions of speech therapy and denied the occupational therapy entirely. When I looked into appealing the decision on the occupational therapy, I found that I would likely have little success. The contract that the Commonwealth of Virginia has for state employees provides for occupational therapy in cases of rehabilitation only – when a patient has had skills previously and lost them due to illness or injury. OT, in this case, is considered habilitative in that it would assist Jimmy in acquiring skills he does not already have. As a result Kaiser will not cover it, regardless of the recommendations of the neurologist who diagnosed him with autism or their own physician, who concurred with the findings of the neurologist.

Not wishing to seem ungrateful for what is covered, twelve sessions of speech therapy at a half an hour a session for a four year old that is just starting to develop language is woefully inadequate. In reality, even though the referral has been approved, Kaiser deals with only one speech center in Northern Virginia, an hour away from our home in Manassas Park. We have been on their waiting list for several months now just to get a slot on their schedule. Some at Kaiser have suggested to me that helping Jimmy is role of the school system, that systems like ChildFind exist to provide help to these children. Jimmy has been attending Cougar Elementary School’s Early Childhood Special Education preschool class since January 2004, when he started the program at age 2½. While I look at these teachers with awe at what they have been able to accomplish with my son, the reality is that children like Jimmy need one-on-one care and therapy to gain the skills they need to function in the world, to overcome this medical diagnosis on the autism spectrum. No one would ask a teacher to set a broken leg, perform brain surgery, or teach someone with a spinal injury how to walk. Leaving these medical and therapeutic functions to educators is wildly inappropriate. Special education should supplement medical and therapeutic care for children like my son, not serve as a replacement for it.

The reality for my day to day life is, in addition to the cost that one might anticipate in raising a family such as housing and daycare; I pay about $40 an hour to a therapist from a place called the Matthew Center in Manassas. This therapist delivers speech and social therapy to Jimmy at his daycare center. After an assessment of his level of function and his progress, she recommended eight hours a week of therapy for my son. Financially, I am stretching to pay the two to four hours a week I have her deliver, running up credit card debt to free up the cash to provide the most basic therapeutic care my son needs. Doing intensive therapies that Jimmy could really benefit from like ABA (Applied Behavior Analysis) is out of the questions because of the lack of funds and insurance coverage. When you are looking at your life and realize that you child has needs that you are unable to meet, it is heartbreaking. It is an enormous stress on parents, families, and the larger community. I believe and love this child more than anything in the world and his future is big question mark because I can’t get the care he needs now. Since his is a medical diagnosis, these services should be covered in the same manner as his visits to his regular doctor or specialist. There shouldn’t be a distinction in habilitative versus rehabilitative therapy – therapy recommended by a doctor should be provided and covered, period.

Stronger laws are needed to force insurers to provide needed care for children with the medical diagnoses that fall under the umbrella of the autism spectrum disorders. While SB1049 is a step in the right direction and one that would benefit a number of families, I would be remiss if I didn’t say that it still isn’t enough. It should be part of any insurance coverage, not an additional rider to be paid for by Virginia families. No one would dream of asking for this from someone whose policy included someone with chronic condition like asthma. In addition, my son’s needs aren’t going to go away at age five. Kaiser refused to write a referral to have his developmental delays assessed by a specialist until the age of the three. It was a four month wait for an appointment. Currently, I am anxiously awaiting an appointment with a developmental pediatrician on September 20th at Children’s Hospital. I made this appointment in early February of this year – and, yes, I took the first one they had available! Hopefully, you are beginning to see the problem with setting a limit to coverage for under the age of five – nothing in the world of autism happens quickly, ever.

Although SB1049 should go forward, be voted on, and hopefully pass in the General Assembly and become law, you cannot stop there. Habilitative care and therapy for all children with autism should be provide and covered by insurers in Virginia. It is a benefit not only to children like my son and families like mine, but to all taxpayers in Virginia. By making the investment now in these children, allowing them to receive the medical care and therapies they need, can they achieve the basic functioning that the rest of us are fortunate enough to take for granted. Through this investment, children like my son can go on to become taxpaying citizens rather than draining resources through disability payments.

Look at my child. I watch him read books and laugh at the jokes that Cookie Monster makes on Sesame Street. He can’t converse with you, but he can put puzzles together quickly and figure out a way to get disassemble the child safety knob so he can get in the basement. Once he gets to know you, he will take you by the hand and give you a tour of the house. He laughs, cries, and loves like any other child. He deserves my very best and I give it to him every day. He deserves your best as well. I am here today for every other mother in Virginia who has an exceptional child like Jimmy. They all deserve the best care and therapy available and have a right to just that. That is why I ask you on behalf of mothers of children on the autism spectrum in Virginia to vote for SB1049 and to continue to explore ways to meet these needs of children with developmental disabilities in this state.

Thank you.