Advanced Notice of Proposed Rule Making


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
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 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