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Olmstead Executive Order

VOR Action Alert

August 8, 2001

Table of Contents

1. Purpose of this Action Alert
2. Template letter for your use

New Freedom Initiative Group
Department of Health and Human Services
P.O. Box 23271
Washington, D.C. 20036-3271
newfreedom@cms.hhs.gov

These comments are submitted in response to President Bush's Executive Order Number 13217 (the "Olmstead Executive Order"). We understand that federal agencies are evaluating their policies, programs, statutes and regulations to identify barriers to community programs.

FOR ORGANIZATIONS: I represent _____________ [Name of Group], an organization representing [describe constituency, i.e., family members of individuals residing at Denton State School and Hospital]. While many of those people we represent are receiving high quality services and supports within an institutional setting, our mission supports the availability of a full array of quality residential options, regardless of setting. Consistent with Olmstead, we believe it is important that individuals and their families be afforded the opportunity to choose a setting that is most responsive to individual need, whether that be an institution or a community-based setting. _______________ [Name of Group] is also a member of Voice of the Retarded, a national advocacy organization.

FOR INDIVIDUALS: I am the [mother/father/sister/brother/friend] of ______________ [name of individual and describe his/her situation age, disability, living arrangement, etc.]. I am also a member of ______________ [state group(s)], and Voice of the Retarded, a national organization. Consistent with Olmstead, I believe it is important that individuals and their families be afforded the opportunity to choose a setting that is most responsive to individual need, whether that be an institution or community-based setting.

There are a great many people with mental retardation who require and choose high quality community-based supports. Barriers to high quality community care include --

(1) Lack of access to health care (including dental, medical and therapies) and other services; and

(2) Lack of access to quality community based residential services, due in part to the lack of uniform quality of care standards in community-based settings. Oversight, monitoring, and accountability of community-based programs is lax; reimbursement levels are low; and there are significant problems with direct care worker issues relating to wages, training and retention.

HHS can proactively address these concerns by endorsing the "Centers of Excellence" program. Through this program, the tenured expertise located at large private and public Intermediate Care Facilities for the Mentally Retarded (ICFs/MR) for its residents is made available on-site to non-residents in the surrounding community. People residing in community- based settings can have access to high-quality medical, dental, therapies and other services. Furthermore, training of community direct care staff and partnerships with universities can be established. Voice of the Retarded can provide additional information about this innovative program (contact: Tamie Hopp, Executive Director, 605-399-1624 voice; 605-399-1631 fax; vor@compuserve.com).

As HHS considers these and other comments, please consider the unexpected impact that deinstitutionalization has had on community-based programs. Valuable expertise has been lost as ICFs/MR close and some community-based health care programs have become overtaxed as community-populations increase due to deinstitutionalization. HHS is cautioned to remember that in addressing legitimate barriers to community expansion it not create another need by dismantling the ICFs/MR option. This action would be contrary to Olmstead, which expressly requires the maintenance of a full array of residential options, and contrary the best interests of all people with mental retardation.

Thank you in advance for your consideration of these comments.

Sincerely,

Name, address, phone, fax, e-mail

VOR * 836 S. Arlington Heights Rd., #351 * Elk Grove Village, Illinois * 60007

877-399-4VOR ph. * 847-253-0675 fax * tamie327@hotmail.com