Key autism issues for Maryland

[Chronologically, not necessarily in order of importance.]

1. Emphasize the early detection of autism. The scientific literature indicates that “the earlier the
intervention, the better the outcome.” Accordingly, it is critically important that pediatricians are
educated on the use of early diagnostic screening tools for autism and other developmental
issues. If further evaluation is required, pediatricians should provide referrals to specialized
facilities for complete diagnostic evaluation. Indications that something is amiss can be identified
as early as one year, whereas many children go undiagnosed until age 3 or 4. And on the higher
end of the autism spectrum, many a child with Asperger’s syndrome is not getting diagnosed until
8 or 9 years of age.

Again, the earlier the intervention, the better the outcome, and importantly, the lower the ultimate
cost of care. This concept is key. What this means is that we all (families, government and
insurance companies) save money in the long run. Each child’s potential can be maximized if the
problem is addressed earlier rather than allowed to deteriorate; this is essentially a “preventative
medicine” approach to dealing with autism. Since this is a societal cost (i.e., the government—
us, the taxpayers--gets left “holding the bag” if nothing is done), it is appropriate that society
contribute in the front end (the “preventative” part). Therefore [see items 2, 3 and 4]:

2. Mandate insurance coverage for individuals with autism via higher health care premiums for
all; to the extent that early intervention and access to appropriate supports can help to make
individuals with autism ultimately more independent and more capable of being self-supporting,
the cost to the government—us, the taxpayers—will be lower in the long run. The issue is about
reducing the ultimate cost of dealing with a health care issue—autism--and one could make an
argument that health insurance companies are the best vehicle for doing that.

3. Expand the autism waiver. By expanding the autism waiver, which now has a waiting list of
___________, families will be able to access critical services and supports for their children with
autism. Currently parents are waiting years not weeks or months for basic appointments,
assessments, and services. Kids are going without occupational therapy (OT), physical therapy
(PT), speech, social skills supports - they age out of the programs before their names even come
up!

4. End the DDA waiting list. Children and adults with significant developmental disabilities
throughout Maryland need essential services to remain with their families and in their
communities. These services have not been adequately funded, so individuals with
developmental disabilities and their families have been placed on a Waiting List for community
services kept by the Developmental Disabilities Administration. The list has grown to crisis
proportions. Over 18,750 children and adults in Maryland are stuck on the Developmental
Disabilities Waiting List for community services, with over half of them in a crisis category for at
least one service. Action is needed. Families can’t wait any longer.

5. Address the gap in coverage for the 18-21 age group. There are individuals who are capable
of graduating from high school at age 18 (and hence are no longer eligible for services from
MSDE) but are not eligible for services from DDA until age 21, yet still require supports and
supervision; e.g., they may have fixations with fire (i.e., lighting matches) or they may be
“runners” (elopement), either of which would require close supervision and might well require one
parent to stop working and stay at home with their child, thereby creating significant financial
hardship for the family [these are real life examples].

6. Ensure that individuals have access to assistive technology to communicate once they leave
the school system. Every young adult with autism should exit school with a communication
system that they can use as they enter their adult lives. The ability to communicate is a basic
human right. Currently assistive technology devices obtained through the IEP process are the
property of the school system. It is inconsistent, if not unconscionable, to provide individuals with
such access while they are in school and then NOT provide such support once they turn 21.

7. Integrate autism-specific training into all agencies that serve children and adults with autism.
Individuals with autism have unique needs, specifically: a preference for visual presentation of
information and structure, stability and predictability in all aspects of daily life. A special focus on
individual safety is also critical. Two examples may illustrate the issues:
a. While most individuals appreciate free time and would, for instance, look forward to an
extended lunch break, individuals with autism characteristically do not know what to do
with free time—thus unstructured free time, such as an extended lunch break, might well
produce anxiety and even, as a consequence, inappropriate behavior
b. An adult with autism may have graduated from high school, but is NOT competent to
cross the street by himself. [lack of awareness of safety]

Also, Maryland's state vocational rehabilitation system often does not work for clients on the
autism spectrum. The design of the training programs is not amenable to the longer-term, hand-
over-hand, social skills coaching, and visual supports autistic adults need. Often adults with
autism are put on leave or asked to leave the training programs when very simple, cheap or free
supports backed by research could be implemented with relatively little time and effort. Again,
there is a need for staff training, as individuals with autism, given their poor social skills, are often
dismissed by vocational and rehabilitation agencies, as well as potential employers, because they
do not “appear interested or engaged in the process” of seeking employment.

8. Assist individuals with autism to obtain and maintain employment. Many adult agencies are
very inadequate in helping individuals with autism find employment. Social skills deficits are one
of the core features of people with autism, regardless of their level of functioning or intelligence.
Too often agencies will send out the individual with little or no preparation with an untrained job
coach for “cold calls.” Without advising the potential employer beforehand about the type of
individual they will be meeting, this type of job search leads to disappointing results for all
involved. Also, it would be helpful to create incentives for employers to hire individuals with
autism (and other disabilities, as well).

9. Create incentives to ensure that all areas of the State are adequately served by adult service
agencies that are prepared to address the needs of individuals with autism.

In summary, the object should be to develop a comprehensive, coordinated system of care

across the state that will ensure that a continuum of supports are available, well-utilized, and
appropriate for children and adults with autism throughout the state.

Edited/organized by Brian Mund