Testimony

YAI is a network of seven not-for-profit agencies serving over 20,000 people with intellectual, developmental and other disabilities throughout 450 community-based programs. Our 5,500 dedicated and highly trained staff provide services including early intervention, primary and specialty healthcare, day services, residential, job training, recreational, respite, home health, family support, camping, travel and many others in all five boroughs of New York City, Long Island, the lower Hudson River valley, northern New Jersey, Puerto Rico and the US Virgin Islands.

When YAI was founded in 1957 we served people with autism spectrum disorders (ASD), although at the time we did not label them as such. Today we are New York’s largest provider of services to people with ASD, serving nearly 4,000 people on the spectrum ranging in age from infants to senior citizens.

I would like to commend the New York State Senate for your attention to this issue and for the collaboration which is evidenced by this joint hearing. Both pieces of legislation before you today, S-6123 and S-2366 represent important steps forward in ensuring that New York families with a member who has an ASD are enabled to access essential medical services without risking financial ruin. Although we believe that there is room for enhancement in both bills, there is much to admire in both.

We believe that S-6123, introduced by Senator Huntley, addresses the issue more comprehensively. My testimony here today will focus on highlighting the critical factors that must be addressed in any bill, and enhancing essential components in each bill.

First and foremost, any arbitrary age for cessation of funding for ASD is unacceptable. S-2366 has a cut-off at age 21. ASDs are life-long disorders. With the appropriate services and supports a person with an ASD can live a life of productivity and joy and can play a meaningful role in his/her community. Their need for supports, however, will not disappear. There is simply no medical justification whatsoever for cutting off insurance coverage for services at any age. Moreover, many adults with ASD continue to live with their parents. Loss of coverage in these instances will no doubt cause undue financial and emotional stress on parents who have committed themselves to the well-being of their adult child. As I said earlier, YAI Network currently serves people with ASD who are well into their golden years.

Furthermore, as a matter of simple fairness, there is no other medical condition, disorder or syndrome for which New York State has an age cutoff for access to services. Why should ASD be the first?

Secondly, there should be no capitated reimbursement for ASD services—no dollar limit should be set. No two individuals with autism are alike and every effective intervention is individually designed. S-2366 includes an annual cap of $36,000 on a particular treatment modality, Applied Behavioral Analysis, whereas S-6123 contains no such annual cap. Placing this type of limit on a service for which the need is so individualized is detrimental to those whose annual needs exceed this reimbursement. While we do not support annual limits on any therapeutic intervention, it is most crucial for people with autism to be able to receive the appropriate therapies without limitations. Life-long chronic illness and disabilities should not be capped in any way. The justification for A-6001, the companion bill to S-2366, indicates that ASD treatment can cost a family up to $50,000 per year and laments that families are sometimes forced to risk their homes and their children’s educations in order to finance the out-of-pocket expenses. We see no reason families in that situation should have the first $36,000 covered but no other additional costs if a licensed physician diagnoses autism as the disorder and prescribes a medically necessary package of services. Those services should be covered by a health insurance provider irrespective of the cost or the patient’s age.

Third, we cannot allow any existing mandated service already in place to be affected. A critical component of S-2366 is that it states that it "shall not be construed to affect any obligation to provide services to an individual under an individualized family service plan, an individualized education program or an individualized service plan." This is an important protection for families who have successfully secured essential services for their child and must be part of any effective legislation.

Another critical enhancement is the mandating of coverage for Service Coordination. Autism doesn’t happen to a child, it happens to a family. The impact on parents when their child is diagnosed with ASD should not be underestimated. Families need support as they process the information and go through the entire range of emotions and learn to accept that their child has a disorder which may lead to life-long disability. These types of support services are essential to enable parents to manage the stresses and challenges that result from their child’s diagnosis. They also promote and support an efficient care coordination model.

Families also need ongoing guidance and assistance with accessing the right services for their child. As ASD diagnoses have increased, so have potential treatments. Identifying and accessing the right set of services for a child with ASD can become a full time job. If it does, the negative impact on a family can be substantial. Not only can it impact other children in the family and strain a marriage, it can also inhibit a parent’s ability to work, which has a negative impact on the economy. Good, professional Service Coordination can make a huge difference in the outcomes that the child experiences and in mitigating the damage to the rest of the family unit. Because Service Coordination may not be considered a "medical" service by some insurance companies, they may attempt not to cover it. Both bills would be improved by mandating coverage for service coordination.

While it is laudable that the legislation mandates coverage for "one or more tests, evaluations or assessments to diagnose whether an individual has autism spectrum disorders or early indications in children younger than three years of age," we believe that greater specificity is required in order to ensure that families have access to effective screening and the type of comprehensive, multi-disciplinary, state-of-the-art diagnostic tests that enable parents to access the early intervention services that can make such a huge difference in a family’s life.

In November 2007 the American Academy of Pediatrics (AAP) recommended that all pediatricians conduct surveillance for ASD at every well-child visit and conduct a tool-based screening at 18 and 24 months or if a parent expresses concern. These tool-based screenings should be specifically reimbursed by insurance companies as a means of ensuring that all of New York’s children are routinely screened by their primary care pediatricians.

If a child screens positive or demonstrates two or more warning signs to the pediatrician, the AAP strongly recommends an immediate comprehensive evaluation "by a team of child specialists with expertise in ASDs." This evaluation has three goals, assessing the overall level of the child’s functioning, making a categorical diagnosis of ASD and identifying the etiology of the disorder.

Families undergoing this type of comprehensive, multi-disciplinary assessment are under enormous stress and experience exceptional anxiety. It is critical that they not also be confronted with concerns about the cost.

The rate of people diagnosed with an ASD has increased significantly in recent years. Whereas for many years the prevalence of ASD was estimated at four to five per 10,000, the Center for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring Network announced in 2007 that one in every 150 eight-year-olds in the United States is estimated to have ASD. Still more recent studies have indicated that the prevalence could be one in 100 or even higher. Given the high numbers and new research efforts, any legislation which is passed must be flexible enough to ensure that people have access to the most current scientifically-validated treatments.

There is much debate about the causes of this dramatic growth. But regardless the cause, there can be no debate about the need to provide appropriate medical services to people with ASD and their families. And while our understanding of best treatments is constantly evolving as the science of ASD rapidly expands, we have known for some time now that if an ASD is diagnosed accurately and treated early in a child’s life, the long-term prognosis improves substantially. Only by ensuring that insurance companies pay for services can we make certain that the people who need them have access to them in the timely way that ensures they have the greatest impact.

You have before you today two potentially powerful pieces of public policy. The costs are low and the probable benefits are very high. New Yorkers with ASD deserve to have access to the healthcare they need to live full, productive lives as participating members of their communities. You have a chance to make sure they get it. Please don’t let them down.

Thank you.