Re:Re:HCBSwaiversDon'tMissThisCriticalOpportunityToComment

[Guest guest]

Re posting on 8/18/09 from Randee for ARC of pbc:

Don't Miss This Critical Opportunity to Improve Medicaid Home and Community Based Services (HCBS) Waivers * Comments due to CMS on Friday, August 21 *On June 23, the Centers for Medicare and Medicaid Services (CMS) published an Advance Notice of Proposed Rulemaking (ANPRM) on the HCBS waiver program. CMS issued this ANPRM to solicit advance public comments on the merits of providing states the option to combine or eliminate the existing three permitted waiver targeting groups, and on the most effective means to define home and community. See the 4-page ANPRM at http://edocket.access.gpo.gov/2009/pdf/E9-14559.pdf

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The following is my public comment, posted to the CMS site before the deadline.

Regarding the characteristics of home and community-based settings:

It is imperative that: Individuals must have maximum choice, control and individual liberties. Where federal guidelines and state practices conflict with this imperative, the choice and control of the individual must prevail. Individuals with developmental disabilities, with the assistance (if required and requested) of family members, caregivers, guardians, chosen friends, and chosen advocates, are presumed competent to make all fundamental decisions with respect to their own lives. Their lives, their choices.

In developing guidelines, we must guard against overly defining "community-based". Such definition is inherently artificial and applying artificial criteria has and will inevitably deny choice. Guidelines must acknowledge that each person experiences "community" for themselves based on what is meaningful for them personally, in their individual lives. Anything else is "other people" inflicting their views & their agendas & even their fears on them. This kind of intrusion into the personal lives and decisions of people with disabilities must be rejected as a violation of the civil rights of those persons. Discriminatory barriers to the exercise of real self-determination must be removed wherever they are found. Please, let us not codify into these guidelines some new, additional, arbitrary definitions that will at the State level morph into discriminatory statutes and administrative practices that will infringe on individual choice.

I look forward to CMS developing guidelines for the States that will limit their heretofore "flexibility" to employ fluid and arbitrary criteria to intrude upon matters properly reserved to individuals, such as where to live and with whom. There is a need to be clear that nothing in federal guidelines or state laws or practices or even the much misinterpreted Olmstead Decision can be used to trump the fundamental rights of individuals to make decisions free of the fear of losing desperately needed HCBS funding merely because they move from one living situation to another based on their own preferences and needs informed by their own personal experience of and definition of being "in the community". It is a matter of individual freedom. And it needs to be crystal clear that it is a matter of law. Federal guidelines must recognize the following: Residential settings must be person-centered and choice-based rather than policy and agenda directed. No more arbitrary false definitions of "community" derived at by distancing, density and quota requirements. No more arbitrary false definitions based on amenities or programs present or absent.

Individuals with disabilities must not be denied any of the residential alternatives that are available to all citizens. One size does not fit all. Needs, interests and personal preferences differ. All choices must be respected and supported.

Individuals with disabilities should be able to choose to live in a setting where they have access to social and recreational opportunities that are meaningful to them, personally. This includes the freedom to live in close proximity to their chosen friends so they can spend time together if and when desired, in a spontaneous way, not dependent on the extensive preplanning needed for transportation, scheduling and coordination of support people.

Living in group homes isolated from one another and scattered throughout larger communities may not be consistent with the day to day kind of freedoms some individuals desire. There is very little self-determination exercised in many of those "mini-institutions". The mere physical location and address of a building structure is not determinative of living in "the community".

Like all people, individuals with disabilities should be free to simply share a life with people who care about them and for whom they care. Public policy should promote and support this most basic freedom. Social connectedness fosters safety, health and happiness.

All individuals with disabilities must have meaningful alternatives to institutional care. And there must be a range of alternatives that respect the needs and preferences of the primary stakeholder, the individual least deferred to, the individual with a disability.

Discriminatory statutes that restrict the development of residential settings must be repealed. Discriminatory practices in the way HCBS waivers are administered by State agencies must cease. Coercion by threat of losing needed supports must not be tolerated.

Caution! Federal guidelines must not add yet a new "authority" that can be used to deny the exercise of self-determination and choice. Federal guidelines must clearly reaffirm and protect the rights of individuals with disabilities and their families to make decisions about all things fundamental to their lives, including where to live and with whom. It is imperative that individuals retain maximum choice, control and individual liberties. They need not trade their freedom for support. Nothing trumps the civil rights of our citizens. Their rights. Their choices. Their lives.