Community Choice Act - Archives 2/26/10 9:13 AM

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ADAPT comments on CMS HCBS Waiver

Flexibility
Date Mailed: Sunday, August 16th 2009 03:44 PM

The Comments for HHS' Medicaid Program Home and Community Based Services
(HCBS) Waivers are due August 21st. Below are ADAPT's comments, for you to
use - if you
want - to develop your comments. Feel free to share them with others
groups and individuals you know who might want to comment too. We need as
many positive comments as possible, so please get other
people in your state or groups you are involved with to comment as well.
(You know opponents of these changes will be commenting in force!)

********
The ANPRM (Advanced Notice of Proposed Rule Making - the full text) can be
found at http://edocket.access.gpo.gov/2009/pdf/E9-14559.pdf.

********

DATES: To be assured consideration, comments must be received no later than

5 p.m. on August 21, 2009.

ADDRESSES: In commenting, please refer to file code CMS-2296-ANPRM.

Because of staff and resource limitations, CMS cannot accept comments by
FAX
transmission.
Submit comments in one of four ways (please choose only one of the ways
listed):

1. Electronically. You may submit electronic comments on this regulation to

http://www.regulations.gov.
Follow instructions under the ''More Search Options'' tab.

2. By regular mail. You may mail

written comments to the following
address only:
Centers for Medicare & Medicaid Services,
Department of Health and Human Services,
Attention: CMS-2296-ANPRM,
P.O. Box 8016,

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Baltimore, MD 21244-1850.

Allow sufficient time for mailed comments to be received before the close
of
the comment period.

3. By express or overnight mail. To the following address only:

Centers for Medicare & Medicaid Services,
Department of Health and Human Services,
Attention: CMS-2296-ANPRM,
Mail Stop C4-26-05,
7500 Security Boulevard,
Baltimore, MD 21244-1850.

4. By hand or courier. See ANPRM for these instructions

************

ADAPT's COMMENTS CMS's Advanced Notice of Proposed Rule Making

ON HCBS FLEXIBILITY

file code CMS-2296-ANPRM

ADAPT is a national grassroots disability rights organization fighting to

reform the institutional-biased long term care (LTC) system. Developed 44
years ago, the current LTC system is based on institutional services as the
default; is extremely costly, fragmented, and inefficient; and is disliked
for a variety of reasons by consumers, providers, professionals, bureaucrats
and politicians. The time for change is long overdue, and is necessary to be
in concert with some of the health care reform principles being promoted by
the President and Congress, namely consumer choice, cost
effectiveness/savings, and covering more people.

ADAPT applauds CMS for issuing this ANPRM, which continues the transition to
services based on functional need rather than disability/aging label. By
giving states maximum flexibility to combine various populations and develop
waivers based on actual need, not arbitrary disability or age labels, they
will be able to better use scarce resources to serve more people with
disabilities and older Americans.

Compliance with the ADA and the Olmstead Decision

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Because the current system does not adequately target the functional needs
of individuals, in some cases it actually discriminates against people who
have severe disabilities that don't meet the specific medical or age
eligibility criteria of existing HCBS programs who could otherwise meet
their functional needs. For instance, a person with a traumatic brain
injury, or someone born with fetal alcohol syndrome or Autism, might very
well need the same services as an individual with a lower measured IQ
score, but might not meet the IQ eligibility, or age of onset criteria that
are often part of developmental disability waivers.

The current system continually puts states in jeopardy of violating both the
Olmstead decision and, therefore, the ADA because they can't adequately meet
the needs of severely disabled people in the current silo-funded waiver
configuration. Olmstead plans typically follow this silo mentality, and so
currently, states don't take a coordinated approach to providing long-term
services and supports. This lack of coordination results in fragmentation,
inefficiencies, and the ultimate outcome is that people do not get the
customized services they need to live in the community. And too often, they
may be forced to accept costly services that they neither want nor need. As
we all know too well, one-size doesn't fit all, and rarely fits anyone
properly. Silo-focused state agencies sometimes develop Olmstead plans in
total ignorance of what the rest of their state is (or is not) doing. This
isolated approach results in great difficulty for CMS, state politicians and
advocates to easily comprehend or monitor exactly what is being done to
comply with the Olmstead decision requirements.

Moving from a silo-type system to a person-centered, functionally-based

system will assist in breaking the culture that has developed over time that
assumes that people with disabilities and older Americans need "programs" to
be pigeon-holed into, rather than we chose support services, based on
functional need. This "program-pigeon-hole" culture helped create and
expand costly, segregated nursing facilities, institutions, and other
congregate settings. In the current system, different eligibility criteria
for different programs sometimes require people to move from one program
into another program with less or different services simply because they
become older. The proposed functionally based waiver would fix this problem.

Administrative Efficiencies

Developing functional waivers as a choice for states will eliminate

administrative duplication and waste. Enormous amounts of paperwork
currently required will be reduced, and hopefully states will review the
excess number of multiple state agencies that have evolved solely because of
the way money flows from HHS. States waste time and critical resources

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developing MOU's across agencies just trying to understand what each one
does. While this goes on, individuals with needs fall through the
bureaucratic cracks. People who have both physical and mental/cognitive
disabilities can't get all the services they need for both (or multiple)
disabilities at the same time because of separate waiver programs,
different agencies running each type of waiver, and/or different waiver
priorities within the agencies. Frequently the same inefficiencies also
exist in age specific programs

The ability to develop HCBS waivers on a functional basis will assist states
to develop a uniform functional assessment, uniform contracting procedures,
logical rate setting, uniform licensing, comprehensive quality standards,
and uniform health and safety requirements. This functional system would
also assist in logical long range planning based on actual need rather than
the current one-size-does-not-fit-all age or disability label.

Provider Rates, Workforce

Delivering services based on need would allow providers to serve multiple

populations instead of a narrow population. In today's system, providers,
frequently limited to one narrow group, end up fighting each other for
scarce resources at the statehouse. A functional system would allow for
more logical rate setting for the same type of service rather than today's
varying rates for the same service across different waivers.

These differences in rates cause unnecessary and wasteful competition for

workforce

at both the technical and non-technical levels. The differences, as

currently negotiated in separate funding silos, additionally perpetuate the
myth that there is some type of vertical scale where one disability is
better or worse than another, or worth more or less than another.
Perpetuating this mythology causes division among disability and aging
groups, as well as among state departments and agencies. It is
counterproductive for all concerned, from the individual, to service
providers, to the state, the state legislature, and, ultimately, the federal
government and the taxpayer.

Fiscal Efficiencies for States

Waivers based on functional need would make state waiver expenditures easier
to track, and thus make the State budget process more predictable. Trying

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to get accurate, reliable data in the current system is extremely complex,

and some would say impossible. It would be very helpful to have the name
of each program, who is served by that program, the number of people served
by each program, the individual program budgets, and the number of people on
each waiting list, if any. Information on rates between programs would also
be very helpful. Using a functionally-based waiver, with multiple
populations having their various needs combined, data collection could be
done more uniformly, and would thus improve demographic forecasting across
age and disability for the future,

To be totally effective, a cost-neutrality formula needs to be developed for

the combined-population functional waivers based on the average per person
cost of the combined nursing facility and ICF-MR funding, instead of trying
to place an arbitrary cost cap based on each separate institutional label.
For example, many people with cognitive disabilities (e.g. brain injuries,
stroke, Alzheimer's, etc.) that are not due to congenital intellectual
disabilities, or are not acquired before age 22, may need a more extensive
package of services than can be provided under the nursing facility cap.
Therefore, we propose that a new cost-neutrality formula be developed where
the average cost per person on the new functional waiver must be less than
the average cost per person for the total of the state's nursing facility
costs plus the ICF-MR costs. This would not disrupt current waiver
cost-neutrality calculations, and would instead allow for one innovative
cost-neutrality formula for these new cross-disability waivers.

Technical Assistance

Technical assistance should be developed and provided by individuals who

have expertise in the delivery of person-centered consumer-directed home and
community-based services as well as people with a variety of intellectual,
physical, sensory, mental and health-related disabilities. A
cross-disability team of people with disabilities, along with Independent
Living, Area Agency on Aging, and Developmental Disability "experts" should
be assembled to deliver this technical assistance. Knowledge of grassroots
resources and hands-on experience will be invaluable to states as they move
to a more person-centered system, and will provide a menu of possible
strategies for states to customize, while assuring states that they don't
have to re-invent the wheel..

Too frequently CMS has contracted with or promoted technical assistance from
so-called professionals who speak bureaucratic lingo but don't understand
how systems relate to the needs of real people, or how things work in
disparate states, or how to account for differences in
urban/rural/frontier/tribal communities.

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HCBS characteristics

HHS/CMS/OCR need to develop benchmarks that states must meet if they are to
be funded for person-centered, functionally-based HCBS. Without
transparency and accountability states may ignore changing their system or
pervert the intent of this new waiver. Benchmarks could include:

1. Increase in budget for home and community services,

2. Ratio between institutional and community services budget moving to an

increasing percentage of funding going to community, while the percentage of
funding going to institutional settings decreases;

3. A reduction in number of people on waiting lists by program.

We object to support services being linked to housing because a problem with

or the loss of one will almost assuredly cause a problem with or the loss of
the other if they are linked. However, if a state is approved for any
Medicaid community service, we advocate that they must assure that those
services are delivered in an accessible, affordable, integrated setting,
that the individual has a lease protecting their housing rights, and that
the individual has control of who comes in and out of their front door.

All waivers should have a requirement that a person-centered,

consumer-directed service delivery option was offered, and offered in a
manner that is accessible to the individual or their representative.
Documentation on how this was done should be required.

Though we strongly object to services being directly linked to (accessible,

affordable, integrated) housing, we do support coordination between agencies
that provide accessible, affordable, integrated housing, and those that
provide HCBS services. One idea could be to create a service in the waivers
called "Community Integration Services" that would allow States to reimburse
community organizations for those specific community outreach services like
locating affordable, accessible, integrated housing or helping someone
secure the furniture and other items needed to set up a household that are
necessary for institutional diversion and/or transition person-centered HCBS
to be successful.

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Stakeholder Input

Meaningful, ongoing stakeholder input is critical. In the past CMS has not
required, or has not monitored who the stakeholders are, or what their role
is, or, in some cases, if stakeholders really had any "meaningful" input on
an ongoing basis. Stakeholder groups should be composed of at least 50%
primary consumers, including cross-disability recipients of services, and
the consumer organizations that deliver consumer-directed HCBS. The
remaining membership of stakeholder groups could be comprised of state
employees, advocates, attendants/direct care workers, as well as secondary
consumers/family members, members of the IL, AAA and DD communities,
disability and aging coalitions, and groups like ADAPT.

Thank you for the invitation to comment on the proposed rules.

NATIONAL ADAPT MAILING LIST - Adapt Community Choice Act List http://www.adapt.org

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