N.H. establishes council to address prevalence of autism spectrum disorders
(January 2009 Issue)

Teresa Bolick, Ph.D., a clinical psychologist in Nashua, New Hampshire is a member of the council seeking to improve and expand services to people with autism spectrum disorders. (photo by Tom Croke)

By Catherine Robertson Souter

The prevalence of autism or related disorders has skyrocketed in this country. In 2004, the Centers for Disease Control (CDC) and the American Academy of Pediatrics issued an alarm for pediatricians and other caregivers to look for early signs of autism in patients because studies had indicated that Autism Spectrum Disorders (ASD) rates were far higher than previously believed. Where it was once believed to strike .004 percent of children, newer statistics showed it present in .04 to .06 percent. Some studies showed higher rates of one in every 166 children as having ASD.

Across the country, states are beginning to take a closer look at services for those affected both as children and as adults. In N.H., Gov. John Lynch recently signed a bill establishing the N.H. Council on Autism Spectrum Disorders.

"We have seen a dramatic increase in terms of the numbers of individuals identified with autism," says Teresa Bolick, Ph.D., a clinical psychologist with a private practice in Nashua, who was appointed to the council by the N.H. Psychological Association. "Even before the current economic downturn, there have been far more needs than there have been resources available, especially in the realm of adult services."

The council, made up of members of various state agencies, autism advocacy and treatment groups, as well as representatives from affected families and autism sufferers, was created to design an implementation plan for recommendations put forth by a legislative commission on autism formed in June of 2007.

Among those recommendations are:

• the establishment of universal screening for young children;
• elimination of the waiting list for developmental services;
• an increase in Medicaid reimbursement rates for paraprofessionals;
• improvement of the transition to and creation of more widespread adult-based services and alternative employment opportunities.

The council has been split into eight working groups to address the various recommendations.

"The goal of the executive workgroups is to put together the beginnings of a work plan to present at our next council meeting," Bolick says.

By the end of January, the goal is to have a blueprint for the future of autism services.

Safety and public awareness are the first areas where the efforts of the commission will be visible.

The area agencies have sponsored opportunities for families to bring children with ASD to police stations where the police collect identifying information and behavioral characteristics," Bolick says.

The information is then distributed to local first responders who will be able to handle this child in an appropriate way if a need ever arises.

"So, if an adolescent is walking down the street and a police officer thinks he looks suspicious or the adolescent runs, if he is on the first responder list, the officer can radio in and find out that maybe this individual is easily startled, has autism, and be quiet and approach slowly," Bolick explains.

In addition to council members, the individual workgroups are made up of an army of volunteers from across the state - professional caregivers, administrators and family members - joining forces to institute change in the system.

"There are a lot of different players involved in this," says State Rep. Suzanne Butcher (D) from Keene who is the prime sponsor of the bills that created the commission and then the council. "This is a medical issue, a family issue, an educational issue, an employment issue. That is what makes it so complex."

Two main fault lines in autism care that the council plans to address are early intervention and the lack of services for adults.

"We have a rising population of ASD who are still relatively young," says Kirsten Murphy, a member of the N.H. Developmental Disabilities Council appointed to the commission and the council. "When these people are adults, they will require expensive long-term, community based support if they do not have early intervention. For someone with autism, over their lifespan, they will cost $3.2 million in services and lost wages. And if anything, that is a conservative estimate."

While advocates see the commission recommendations as groundbreaking and a necessary step forward in the care of ASD in the state, there is one drawback to the entire plan...funding. The council has been created but no money has been earmarked for getting any of the work done. A federal grant was applied for, but not received.

"I'm proud of this plan," Murphy says. "But it is a cruel irony. To have a sensible as well as strategic state plan but no funding is frustrating. I do believe an Obama administration will put more money towards the issue. They have to because it is a medical issue as well."

The group is working to get funding to hire a coordinator for the various workgroups.

"The Bureau of Developmental Services is in contact with the Department of Education to jointly fund a coordinator," says Lorene Reagan, RN, administrator of the Child and Family Supports and Services for the N.H. Department of Health and Human Services. "The difficulty is the serious fiscal '09 budget issues. We are trying to balance our requests with the understanding that the state is in financial crisis."

"We have a high level of commitment here in New Hampshire," Reagan says. "We are committed to making sure that individuals with disorders get the services they need."

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