Dec 7, 2011

Disability Groups Urge Feds To Decide On Community Living

By Michelle Diament | November 29, 2011

Months after the end of a public comment period, dozens of disability
advocacy groups are pressuring Medicaid to make a final decision on new
rules that would define what qualifies as community-based housing.

In a joint letter sent last week to officials at the Centers for Medicare
and Medicaid Services, nearly 100 advocacy groups asked the government
agency to “move swiftly” on a proposed regulation that would limit the
types of qualifying residences under Medicaid home and community-based
services waivers.

The proposal, issued in April, called for the exclusion of homes designed
exclusively for those with disabilities as well as residences with
“regimented meal and sleep times, limitations on visitors, lack of privacy
and other attributes that limit individual’s ability to engage freely in
the community.”

Medicaid officials say the proposed rules were prompted after they heard
reports of homes built on the sites of former institutions that were being
labeled “community-based.”

But months after the public comment period closed this summer, Medicaid
officials have not yet made a move to issue a final rule, which would be
necessary for the regulation to be implemented.

“Any delay is really unfortunate,” says Ari Ne’eman, president of the
Autistic Self Advocacy Network, and one of the organizers behind the
letter. “We’ve got 95 organizations from across the country on board here
and it seems pretty clear that the disability community stands solidly
behind a strong definition of home and community-based services.”

Nonetheless, the proposed rules are not without opposition. Among the
hundreds of public comments submitted to Medicaid were those from parents
who believe that their children would be best served by living in a
community of their peers with disabilities.

Medicaid officials say they have no specific timetable for issuing a final

“We do not have a target date for final publication of the regulation but
finalizing it remains a priority,” wrote Alper Ozinal, a CMS spokesman, in
an e-mailed statement to Disability Scoop. “We received a substantial
number of public comments. While we are not surprised by the level of
public input…, we have considerable work to review, categorize, evaluate,
consider and respond to each comment, as required.”

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3 Comments (Open | Close)

3 Comments To "Disability Groups Urge Feds To Decide On Community Living"

#1 Comment By disabilitiesrightsadvocate On November 30, 2011 @ 9:25 am

While some people may have been able to convince themselves that these
consumers “would be best served by living in a community of their peers
with disabilities”, the actuality is that we are all peers; with or without
disabilities. The concept behind the most integrated setting set forth by
the Olmstead decision indicates that people with disabilities are more than
capable of living within the mainstream community and this would be
possible with proper supports and services. Individuals with disabilities
would most likely benefit more by living settings beyond group homes,
res-habs and other congregate settings that seemingly mirror the same
parameters of the outmoded institutions. Moreover, the community at large
has the most to gain by having individuals with disabilities living
independently and being integrated into mainstream residences. After all,
individuals with disabilities DO EXIST and have the same rights to
independence as anyone else.

#2 Comments By JR On December 2, 2011 @ 4:17 pm

The changes proposed by CMS last April would limit the use of Home and
Community Based Service Waivers to only those settings found acceptable,
not by the affected individuals, but by advocates following their own rigid
ideology. This ideology is a fantasy of many disability advocates that all
people, regardless of the nature or severity of their disabilities, can
live in “the community” without the specialized programs and settings that
so many rely on for their survival. This ideology is not grounded in the
law, the Supreme Court Olmstead decision, reality, or common sense.

The Supreme Court Olmstead decision supports choice, despite the fact that
it has been widely misinterpreted as a mandate to close all institutions:
“We emphasize that nothing in the ADA or its implementing regulations
condones termination of institutional settings for persons unable to handle
or benefit from community settings…Nor is there any federal requirement
that community-based treatment be imposed on patients who do not desire
it.” 119 S. Ct. at 2187.

Furthermore, the Olmstead decision does not comment specifically on or
mandate the closure of community-based programs or residential placements
of any particular size nor does it designate these programs as
institutional in nature and therefore discriminatory. Olmstead, and by
extension the Americans with Disabilities Act, gives no support to
eliminating or limiting access to settings that are “institution like”,
housing complexes that are “disability-specific” and “expressly designed
around an individual’s diagnosis”, if these services are appropriate to the
needs of the individual.

There are hundreds of thousands of people with disabilities on waiting
lists for services across the country and there is no shortage of ideas for
improving the lives of people with developmental disabilities. When CMS
deliberately and unnecessarily narrows the choice of options available
based on a misinterpretation of law and a questionable ideology, it becomes
an impediment to creating a system that can truly meet the needs of the
full range of people with developmental disabilities, especially for those
who are either not served at all or inadequately served by our current

#3 Comment By kathyd On December 2, 2011 @ 6:57 pm

There is a very broad spectrum of needs represented by the part of our
population who have developmental disabilities. The point of a continuum of
care is to address the unique needs of individuals. Additionally, the
element of choice is legally mandated. The American Disabilities Act, as
well as the Supreme Court Olmstead decision which interprets it, very
specifically defines the right of choice of an institution as well as
“community.” For some, specialized communities can and do provide for
assisted independence in ways that living accommodations in the general
community cannot or does not. Given unlimited money, perhaps that would be
less often the case, but public funding must be stretched to meet the needs
of as many people as possible. I lived for years with the ideal that my
family member with profound id and extremely severe physical disabilities
would live happily in the general community. Truth? Our family was unable
to sustain the constant levels of attention that her conditions required
and, elsewhere in the general community, there proved not to be nearly
sufficient resources for her: financial, personal or professional. The care
that was available to her and others with such severe disabilities was so
pathetically sub-standard that it would never have been tolerated by CMS in
an institution. She now lives in a community of peers with disabilities.
Her choice of bedtime IS honored, her likes and dislikes ARE taken into
account and she is supported in choices that accommodate both. All of her
professional services are centrally located so she can have appointments
without yielding all the rest of the day to them. She does not have a job
in the general community, but then, that would be absurd, since her mental
age, while still progressing at age 62, is still not greater than 24
months. She does, however, enjoy a short bus ride to and from work 5 days a
week. And she DOES enjoy her supported workshop job of crushing cans, which
she does by hitting a big red button. She is delighted with the sound it
makes. Would she like to do something else instead? Other jobs have been
offered and she has tried them, but this is what she likes best. Where she
lives, in a shared home on a campus that is designed specifically to
accommodate the unique and varied needs of people with disabilities, she is
very happy and extremely well cared for. And, economy-of-scale works in
favor of keeping costs for such care lower than in small homes scattered
throughout the general community. Is this how everyone with disabilities
should be required to live? Absolutely not. Everyone should be allowed and
encouraged to exercise their right of choice and the CMS should leave bias
out of their rule-writing. Could her professional providers also serve
people who live off campus? Absolutely. Is there unused property on the
campus that could be developed for independent living by people with dd/id
in proximity to needed professional resources? Absolutely. Should anyone be
required to live there? No, of course not. Should people be allowed to
choose to live there? Absolutely. Lets let CHOICE really work and take
advantage of the benefits afforded by it.