An Enlightened Response to a Public Health Crisis
By Heather Adams, FXB Fellow
Autism has recently reached such a high prevalence rate that is has been deemed a public health crisis by the Insurance Commissioner in California. Far from plateauing or tapering off, prevalence rates continuing to rise. The Center for Disease Control (CDC) estimates that 1/50 children are affected; generally, boys are four times more likely to be affected than girls. The repercussions of the rapid rise of autism are felt globally, nationwide – and locally. Currently, while no solid data within the Commonwealth of Massachusetts exists as to the precise number of individuals with autism, it is estimated that statewide it affects 16,000 children under the age of 18 with autism and 75,000 total.  In response to the ‘strain on an already stressed system’  within the Commonwealth, the 2013 publication of the bipartisan Massachusetts Autism Commission Report seeks to address and redress the significant challenges facing individuals with autism, service providers who support this group, and their families and caregivers.
This transparent report gives a credible appraisal of the current state of services, and provides comprehensive recommendations to redress deficits in current service provision. In synopsis, it identifies multiple priorities which include: expansion of eligibility criteria for adult services; enabling access to mental health services; expansion of intensive services for children in the home and community; implementation of statewide data collection; and an increase in employment opportunities. Notably, a critical juncture for young adults with autism is turning 22. At this point this group ‘max out’ of special education services (SPED), and face the considerable challenge of accessing two critical services central to their well being: adult services and mental health services. Highlighted as key priorities by the Autism Commission Report, this article will focus on these two priorities.
To paraphrase the report, the dramatic increase in rates of diagnosis, joined by insufficient capacity to meet the needs of increasing demand for services, has placed an enormous strain on a system that was not designed to support large numbers of individuals. Cuts in funding, and a lack of expertise among staff in government agencies further exacerbates the strain. The implications of these shortcomings coupled with anomalies of service eligibility and provision for the individual with autism cannot be over stated. For instance, currently individuals with autism who are seeking adult services but have an IQ > 70 are ineligible for support from the Department of Developmental Services (DDS). The report cites a case brought to their attention by the parents of a 21 year old young man in Newton, MA. The parents reported that their son had little ability to care for himself and required constant supervision. The DDS agreed with the parents that his level of functioning was low but because his IQ (72) was too high he was found to be ineligible for adult services. The hands of DDS were tied, and consequently the needs of this young man may not be met.
To rectify this sort of anomaly, the Commission recommends that IQ based eligibility requirements be replaced through the utilization of the Developmental Disability Act (DDA) definition of developmental disability which takes into consideration adaptive functioning skills – a key factor in determining the need for adult services. In addition, it recommends that the DDS report quarterly to the Autism Commission the numbers of individuals with autism in the Commonwealth found ineligible for services. These initiatives, if enacted, would represent significant progress towards addressing the needs of this population.
Another worrying deficit in current service provision highlighted in the report is access to mental health services for individuals with autism who have a co-occurring mental health condition. One study showed that 70% of children with autism had one comorbid disorder and 41% of the same group had at least two comorbid disorders.  Inexplicably perhaps, eligibility criteria to access services provided by the Department of Mental Health (DMH) differ for children and adults. The criteria for children requires the presence of ‘a serious emotional disturbance that results in functional impairment,’ with no requirement that this emotional disturbance be the ‘primary cause of functional impairment.’  Hence, provided the child’s impairment does not manifest only as a result of autism, a child with autism and co-occurring emotional disturbance may be eligible for DMH services. When a child becomes an adult the eligibility criteria for DMH services is more or less reversed. As an adult the requirement rests upon functional limitations occurring as a result of a serious mental illness as the primary cause. Thus an adult with autism whose primary functional limitations are as a result of autism may be ineligible for DMH services even if the individual has a co-occurring serious mental illness diagnosis.
The treatment consequences of this differentiation in eligibility criteria from childhood to adulthood can lead to a ‘disrupt[ion] [in] treatment for individuals with autism.’  Moreover, individuals with autism who meet the criteria for DDS are “categorically excluded from consideration of DMH services.’  Illustrative of this, a professional in the Boston area reported that a patient with autism, depression, mood disorder NOS (not otherwise specified), rage reactions and additional psychiatric symptoms, was not eligible for DMH services as a result of his autism diagnosis. This is of great concern. It is evident from the report that the various agencies tasked with providing mental health and adult services are cognizant of this; however, legislation is required to rectify the array of anomalies within the system which negatively impact individuals with autism and their families. Furthermore, addressing this issue should not be delayed any further. Dichotomies of service provision in the realm of mental health which impede access for those in need puts patients, and their caregivers at risk of danger – unnecessarily. Reform is an imperative.
The two priorities highlighted above are indicative not only of the deficits in current provision but, demonstrate an encouraging proactive response from interested parties who recognize the breadth and scale of the problem. This enlightened approach is laudable. It would be easier to postpone the conversation. However, the challenge lies in securing resources and harnessing political will to effect meaningful change. Legislation at the state level is required to alter the DDS and DMH statutes and regulations to enable these government bodies to provide the recognized necessary services for their clients. Turning 22 is a vulnerable time for individuals with autism and their families. It is not uncommon to hear parents and caregivers describe turning 22 as ‘falling off a cliff’. This comprehensive and far reaching report which advocates a lifespan approach to autism is destined to be enthusiastically welcomed by individuals with autism, their families, and the service providers who care for them.