Dr. Cooley

CONCORD, NH - Dr. Carl Cooley , Medical Director of Crotched Mountain, went before the Health, Human Services and Elderly Affairs Committee of the New Hampshire House of Representatives to testify in favor of HB 396. This bill addresses the issue of autism and calls for the formation of a commission to study autism spectrum disorders in New Hampshire. The commission will be asked to make recommendations regarding the care, treatment, and quality of life of children and adults with autism spectrum disorders and their families. The commission will also be asked to consult families of autistic children and other healthcare experts. To review this bill, go to the New Hampshire General Court – HB 0396 website. The Following is Dr. Cooley's testimony.

Testimony Regarding HB 396
February 7, 2007

Distinguished Representatives:

I might legitimately testify on behalf of my colleagues in pediatrics, my fellow faculty at the Dartmouth Medical School, or the NH Pediatric Society's Committee on Children with Disabilities of which I am the chair. However, I can only in good conscious testify on behalf of the families of children whose development identifies them on the autism spectrum. There are many such families in New Hampshire some of whom are here today. They have experienced worry about their child's early development, false reassurance from laymen and professionals, frustration about delays in referral and diagnosis, and fatigue with the struggle for the services that scientific research associates with better results. Parenting a child with autism should not be a matter of vigilance and confrontation; it should be a matter of supportive partnerships committed to high quality services and the best possible outcomes.

Clearly, there are more families affected by autism than ever before – more than 1 in every 200 children are involved and their siblings have a 1 in 10 risk of this condition. Nevertheless, the process of care in New Hampshire and nearly everywhere is seriously flawed.

Children are being identified later than necessary and referrals for therapeutic services are significantly delayed. Pediatrician and family physicians need to know that when parents are worried about their child's development, there is a high likelihood that the parents' worry is justified. Highly sensitive screening tools exist that should be applied in every primary health care setting serving young children. Training of office staff and reimbursement for early screening needs to be generally available. Primary care settings should launch two parallel referrals when screening for autism raises concerns. First, a referral for early intervention services should be immediate since a definitive diagnosis of autism is not needed for this to occur. Second, a referral to an appropriate diagnostic clinic or specialist should be made to confirm or refine the screening results.

Once identified by developmental screening, parental suspicion, or caregiver opinion, there are serious problems with the accessibility of diagnostic specialists. Among medical professionals, there are three types of specialists who may be qualified to diagnose autism – developmental pediatricians, child neurologists, and child psychiatrists. Unfortunately, these are among the least accessible of pediatric subspecialties, and each has serious workforce capacity problems. There needs to be appropriate public and private reimbursement for high quality, multidisciplinary evaluations of children suspected of having autism. This will both insure that providing autism diagnostic services has a feasible business model and that providing such services is an attractive professional destination.

Families and referring professionals need to have confidence that an array of services of sufficient quality and intensity will be promptly available to children upon diagnosis and continue to be available to them over the years. There are serious shortages of speech pathologists, psychologists, behavioral specialists and others who are crucial team members in the response to autism in young children.

Finally, we need to have accurate information regarding the scope of this challenge, the number of children and families affected as well as the ability to track and monitor the results of our efforts both in the short run and the long haul. Many, maybe most, children on the autism spectrum can grow up to be contributing citizens of our communities if we find the best possible ways to support them and their families from the beginning.

Please support HB 396 to begin the process towards New Hampshire' leadership in support of children, youth, and adults with autism.

Thank you for your attention.

W. Carl Cooley, MD
Medical Director, Crotched Mountain Rehabilitation Center
Greenfield, NH