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
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
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
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 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.
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.
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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