SchaferAutismReport: Helping NIH Recruit Participants for Autism Study - SAR Supplement

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Helping NIH Recruit Participants for Autism Study The National Institutes of Health is conducting a research study to better understand the unique characteristics of children and adolescents with autism. Participants Must:

Live in the mid-Atlantic region in the U.S.

Be 7 to 17 years old

Have been diagnosed with autism before age 6

Currently have the diagnosis of autistic disorder or high functioning autism Note: children who have Asperger’s or PDD-NOS are not eligible for this study.

Average range intellectual functioning

Be able to participate in a one-hour MRI scan Participation includes medical and neuropsychological testing, such as medical and developmental histories, diagnostic and behavioral evaluation, physical exam, an overnight EEG and sleep study, and an MRI scan of the brain. There is no cost to participate in this research project, and compensation, up to $400.00, will be provided. All clinical test results, including results of the neuropsychological exam, will be shared with families. Participation involves two outpatient visits and one overnight stay at the NIH Clinical Center in Bethesda, land. Scheduling is flexible. For more information, please call the study coordinator at or email: AutismOutcomeStudy@... ______________________________________________________ Executive Summary: Response to the Advanced Notice of Proposed Rule Making for CMS-2296-P, Medicaid

Program Home and Community-Based Services (HCBS) Waivers Submitted by A Four-State Alliance for ASDs Adult Community Housing & Living and The Autistic Global Initiative (AGI) This executive summary responds to the ANPRM, detailed in CMS-2296-P. While in some instances the proposed rule change is supportive of the populations we represent, there are several instances where sweeping rule changes negatively impact individuals with autism spectrum disorders (ASDs) and related disorders, and do not afford the nuanced diversity of needs and supports that the terms "person-centered" and "community-based" imply. For a copy of the full letter, see: www.autism.com/pdf/response/agi_medicaid_response_rev.pdf.Participants in this executive summary and the full comment letter have come together for a specific purpose: to offer a collaborative statement that combines multiple perspectives from the autism community. In doing so, we offer commentary that includes self-advocates with ASDs, parents of individuals with autism, service providers, and professionals working in the autism and developmental disability fields. Although we hold a variety of opinions and beliefs, we find the process of understanding one another to be our strength. We share the fundamental values that housing options for our citizens with ASDs and other developmental disabilities must support individuals' safety and security, enable them to enjoy meaningful, productive lives, recognize their value within the broader community and promote choices for them and their families.Our position is simple:

one size does not, must not and cannot fit all. Policies and settings must recognize the heterogeneity and characteristics of individuals with autism and provide appropriate evidence-based supports. We need more quality options as they relate to design, service delivery and training. Key principles for housing options must support the individual's daily life choices, interactions with those without disabilities and accessibility to the broader community. Options must take a multidimensional approach, including the use of technology. Policies that rule out entire housing models cannot be described as person-centered. With the rapidly increasing population of adults with ASDs and our country's fiscal challenges, we must encourage not discourage innovation now more than ever. Greater demand and fewer government resources have resulted in a "New Services Paradigm" (NSP) now being implemented, which shifts 24/7 support resources to those who are

most in need; whose support requirements reflect that they are either a danger to themselves or to others; or who are at immediate risk of becoming homeless. For those whose needs are not as severe, they will be asked to stay at home much longer with their parents, their siblings or other extended family. This group will be offered a menu of service packages and options to assist their families in long-term care, either within the family home or in the community. The result: families will be operating as case managers and service providers. Proper training by support brokers/coordinators in self-determination and self-direction models will be indispensable. In order for the New Service Paradigm to function, individuals with disabilities, their families and the universe of support providers at home and in the community must be informed, trained, empowered and well prepared to successfully navigate daily life and long-term security in the home

and community.+++++The Autistic Global Initiative (AGI) is a program of the Autism Research Institute.

Lenny Schafer editor@... The Schafer Autism Report is a non-profit corporation Unsubscribe: www.sarnet.org/frm/unsub2.htm

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