Write the IACC today!

19 Sep

The IACC (Interagency Autism Coordinating Committee) is seeking input. They have two RFI’s (requests for input) out right now, and one has a deadline of today!

The one with the deadline today is for the services subcommittee. The RFI is on the NIH website.

abfh has noted this deadline. ASAN (the Autistic Self Advocacy Network) has an alert on this, including talking points. This was also discussed recently on this blog.

Talking Points

The Autistic Self Advocacy Network has developed these talking points
to assist individuals in writing statements to IACC on the topic of
supports and services.

The RFI lists a number of areas of concern that can be addressed. You
do not have to address every topic. You can pick the ones that are
the most important to you. Feel free to change the wording so that it
reflects your most important priorities.

Education:

Studies need to be undertaken that assess current levels of supports
and services within the public education system. When treatments and
interventions that look promising are developed, additional funding
must be appropriated to address implementation so that teachers,
students, parents, and other education professionals are up-to-date
and have access to information, training, technological resources
such as AAC, and other resources.

Health and medical services (including dental):

Access to health and medical services, particularly for adults on the
autism spectrum, is of paramount importance for research funding.
Current studies that focus on diagnosis and treatment of children do
not address the very real need for healthcare access for autistic
adults who may not have insurance, may have communication
difficulties and other difficulties that prevent them from obtaining
adequate care. Education of health care professionals so that they
can interact knowledgeable with autistic patients/clients is one area
for research into services and supports.

Housing:

Research into housing alternatives, following ideas such as those in
the Community Choice Act and Money Follows the Person projects,
should be undertaken. Warehousing of individuals in residential
centers is undesirable yet often occurs because infrastructure for
other types of housing is unavailable or underutilized. Research
needs to include cost-effectiveness measures, some of which are
already available, which show that housing in the community costs
less than residential living.

Transitions:

Research into the most effective transition options needs to be
undertaken. Parents and young adults on the spectrum often have
nowhere to turn after they age out of the school environment. A
clearinghouse of options should be researched and developed so that
families will have resources already in place.

Employment:

Research into employment options and opportunities for people on the
autism spectrum needs to include components such as accommodations,
training, and career counseling. Research in other areas such as
treatment, interventions, diagnosis, and genetic research, can be
used to counter stereotypes of what an individual on the spectrum can
do for employment. Resources for trainers, counselors, employers, and
others need to be developed so that autistic people are not
discriminated against in the employment world because of stereotypes
and misunderstanding. The IACC and NIMH can set the tone for accurate
information that can help employers assess individual strengths and
weaknesses rather than relying on discriminatory assumptions.

Community inclusion:

Full inclusion in the community needs to be examined and research
initiatives should focus on this very important aspect of adult life,
and life for children who will grow into adulthood. Community-based
participatory research should be implemented that will accurately
reflect the actual needs of the autistic teen and adult population.

Safety:

Research into areas that can improve safety for autistic people,
throughout the lifespan, and in different situations, needs to be
undertaken. Areas to focus on are keeping people on the autism
spectrum safe if they have a tendency to wander, or do not understand
dangerous situations. Education of parents, professionals, first
responders, and autistic people should be undertaken, and the best
methods for ensuring safety should be addressed by research in this
area. Sometimes autistic people can appear unusual in behavior, which
will attract attention from law enforcement and other personnel.
Training for professionals in aspects of autistic behavior that might
not be understood is a crucial area to address in order to promote
the safety of all.

Older adults:

Many older adults remain undiagnosed. Some have no health insurance.
Some are living in poverty or are homeless. Many older autistic
adults will need medication, including medication for health
problems. Research into how to best reach out to older adults who may
not have an autism diagnosis but may present as in need of services
should be undertaken. Research into the effect of common medications,
including for non-autistic-related health problems such as diabetes,
should be undertaken. Because of the possibility of extrapyramidal or
paradoxical drug reactions, and the general effect of certain drugs
on older people, cases should be documented so that any adverse
pattern of reaction can be established. Housing, health care, dental
care, and community inclusion should all be addressed and tailored to
the older autistic population. Community-based participatory research
can be invaluable in determining the best ways to access health and
other care.

Finances:

Across the lifespan, autistic children and their families, autistic
adults and elders will have various financial needs. Research into
how to help families and individuals on the spectrum cover the costs
associated with treatments and interventions, and a clearinghouse for
resources should be developed. In addition, financial resources for
autistic adults who have difficulty with financial concepts should be
researched and implemented.

Guardianship:

Research into the best ways to establish guardianship should be
undertaken, including autistic adults as full participants in the
research process in order to establish the most ethical procedures
for guardianship. Guardianship should be tailored to the needs of the
individual rather than being a one-size-fits-all category, since some
individuals will need guardianship in limited areas, but not all
aspects of their lives.

Estate planning:

Families with autistic individuals need to take extra precautions in
planning an estate, especially for individuals who may need ongoing
care throughout life. Autistic adults also may need assistance with
estate planning. Research leading to the development of estate
planning tools that can assist families and autistic individuals in
making sound decisions should be initiated.

Take a look at the talking points above. Take a look at the RFI. Then, send an email to the services subcommittee.

2 Responses to “Write the IACC today!”

  1. Phil Schwarz September 21, 2008 at 04:03 #

    Done, at about 11:30pm ET 9/19. Hopefully in under the wire.

Trackbacks/Pingbacks

  1. Autism Blog - IACC: what caused this and can it be prevented | Left Brain/Right Brain - September 24, 2008

    […] bet you thought the nagging was over after this post. Nope, that was for the “services […]

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