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Senate Finance Medicaid Hearing |
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About Voice of the Retarded
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Voice of the Retarded (VOR) is a national, nonprofit advocacy organization. VOR supports a full array of residential and other support options. We support the right of individuals with disabilities, including mental retardation, to own their own home, reside with their family, receive group home services, have supported living arrangements, or receive facility-based care, depending on their abilities and wishes. Choice to meet the needs and desires of people with mental retardation is our bottom-line. We respect individual choice, with family/guardian input and decision-making, where appropriate.
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The New Freedom Initiative
is a call to action to improve the availability of high quality,
community-based services.
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President Bush announced The New Freedom Initiative on February 1, 2001, as part of a nationwide effort to remove barriers to community living and participation for people with disabilities. This initiative focuses on barriers to education, employment, recreation, technology and other impediments to participation based on ability.
VOR applauds great portions of this Initiative. Its release was a call to action to federal agencies to enhance community living opportunities through policy and legislative change. With a national waiting list of more than 200,000 individuals with mental retardation and developmental disabilities, most of whom desire community living, there is a pressing need to expand community resources. The development of federal agency reports was done with full opportunity for stakeholder involvement. Implementation since has resulted in key progress in critical areas, including (a) employment; (b) transportation; (c) recruiting, training, and retaining direct care workers; (d) developing an Office on Disability; (e) expanding respite opportunities; and more, with ongoing opportunities for stakeholder involvement.
Today’s hearing on the New Freedom Initiative, including Money Follows the Individual, and on the Medicaid Community Attendant Services and Supports Act (MiCASSA), provides stakeholders, lawmakers and policymakers, another welcomed opportunity to thoughtfully consider the impact of a myriad of proposals that will have lasting affects on the well-being of all persons with disabilities.
STRATEGIES TO IMPROVE ACCESS TO COMMUNITY-BASED SERVICES
Money Follows
the Individual Proposal
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The Bush Administration and Senator Tom Harkin (S. 1394) have developed separate “Money Follows the Individual” proposals. Both proposals aim to help current residents of Intermediate Care Facilities for Persons with Mental Retardation (ICFs/MR) and nursing facilities transition to community settings. To encourage this transition, both these proposals offer 100% federal funding for the first year following transfer.
VOR submits that any transition grants for people with mental retardation should focus on strategies aimed at providing services to the more than 200,000 individuals with mental retardation and developmental disabilities on waiting lists for services, rather than targeting individuals who are already receiving needed and desired services. Academic Community Resource Centers, which provide badly needed medical care for people in the community, should also be eligible for funding.
The Money Follows the Individual proposals’ misguided focus will have the following unintended results:
(1) The goal of “rebalancing” long-term care systems will not be met.
The flaw is in the assumption that the present system is out of balance to the detriment of community living. In fact, the opposite is true. There are presently 387,566 people receiving home and community-based waiver services (HCBS), a number that is 342% of those individuals receiving ICFs/MR supports. In terms of costs, the ICFs/MR program accounts for only 19% of all Medicaid long term care costs, yet ICFs/MR care for the neediest individuals in the long term care spectrum – people with severe and profound mental retardation, complex and chronic medical conditions, and challenging, often dangerous, behaviors. ICFs/MR truly are the Intensive Care Units of our service system, and while the needs of those served will be expensive to support, just like in an ICU, the ICFs/MR deliver such care in a cost-effective way.
VOR supports a Money Follows the Individual proposal that focuses on helping individuals on the waiting list for services.
(2) Dollars will not be saved while quality of care will suffer.
A peer-reviewed cost comparison study showed that cost of care will be roughly equal across settings if all cost factors are taken into account and all needed supports are provided (“Cost Comparisons of Community and Institutional Residential Settings: Historical Review of Selected Research,” Mental Retardation, Vol. 41, No. 2 (April 2003). Transferring individuals from institutions to the community will not save money, if all necessary services are provided.
If savings are realized due to cuts in services, quality of care will suffer, with often tragic results, as has happened far too often when people have been deinstitutionalized around the country[i]. This is a very real possibility under the current Money Follows the Individual proposals. Per Medicaid law, waiver services must cost less than the ICFs/MR option. This is accomplished by the provision of fewer services. While this is sound policy for those individuals who need less intensive supports (such as many on the waiting list for services), it has been demonstrated to be tragic for many who (like current residents of ICFs/MR and nursing facilities) require 24-hour, on-site highly specialized medical, dental, and therapeutic supports. Furthermore, unlike a waivered setting, ICFs/MR and nursing facilities are subject to rigorous federal oversight.
Additionally, as ICFs/MR are depopulated, the rising per capita costs of those downsized facilities will lead to the closure of ICFs/MR settings, placing even more people who are in need of intensive care and active treatment at risk of abuse, neglect and death.
(3) Contrary to Olmstead, people on the waiting list will continue to wait for services.
Olmstead is about providing service based on needs and choice. The Supreme Court did not, in its Olmstead decision, call for wholesale deinstitutionalization. See, “The Olmstead Decision,” section on pages 7-8, for a detailed discussion about Olmstead.
(4) Contrary to the Supreme Court decision in the Olmstead case, people will not be served according to need and choice.
The needs of individuals with mental retardation are extremely diverse. Some work, go to school, require only preventative health care, and live with some independence. Others have profound mental retardation, are nonambulatory, noncommunicative, require assistance with every daily living activity (toileting, teeth brushing, eating, etc.), and are medically complex, requiring access to on-site, 24-hour medical support.
These two groups and everyone in-between require vastly different supports. Various Medicaid programs, funded by the federal government and administered by the state, are offered to eligible individuals. These programs are as diverse as the individuals who need them and span from a few hours assistance each week to 24-hour ICFs/MR support. Elimination of any component -- including the ICF/MR setting -- threatens the health and welfare of those relying on these public programs.
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A Component of the Overall
Solution: Academic Community Resource Centers
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The significant challenges of individuals with mental retardation and developmental disabilities trying to access quality medical, dental and other health care services in the community is well-documented in the media, in publicly funded studies, research by Special Olympics (http://www.specialolympics.org/healthy_athletes/THE_HEALTH_STATUS.htm) and in scholarly publications, including the recent report of the Surgeon General, “Closing the Gap: A National
Blueprint to Improve the Health of Persons with Mental Retardation” (February 2002) (http://www.surgeongeneral.gov/topics/mentalretardation).
In response to this crisis, and in the spirit of the New Freedom Initiative’s goal to enhance access to community living opportunities, VOR urges Congress and the Administration to proactively establish approval for federal financing, through Medicaid, of university-based Academic Community Resource Centers (ACRCs).
ACRCs are specialty, out-patient clinics that provide desperately needed quality medical, dental, and other therapeutic services to Americans with mental retardation and developmental disabilities living in communities, who have significant difficulty obtaining these services. ACRCs also function as university‑based centers of education, training, and research for medical and dental students, residents, externs, fellows, and professionals.
ACRC’s can be created as stand alone specialty clinics or situated at existing public and private ICFs/MR. Utilizing the existing ICFs/MR infrastructure, which already boasts onsite health care services, is a cost-effective solution that would allow the immediate delivery of health care services to Medicaid-eligible community-based individuals.
The ACRC model, funded solely by state financing, is already delivering health care to consumers and providing training to health care practitioners in Virginia, Kentucky, Massachusetts, New Jersey, North Carolina, Missouri, Washington State, and other states. Federal support and financing is needed to realize necessary expansion of the proven ACRC model.
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S. 971, Medicaid Community-Based Attendant Services and Supports Act of 2003
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S. 971, the Medicaid Community-Based Attendant Services and Supports Act of 2003 (MiCASSA), proposes a mandatory Medicaid entitlement for community-based personal attendant care services. As proposed, this entitlement would be phased in over a period of five years and during that time early-coverage States would be rewarded with enhanced federal Medicaid matching dollars. State responsibilities include the development of a quality assurance program within noted federal guidelines and continued maintenance of funding for Intermediate Care Facilities for the Mentally Retarded (ICFs/MR) at pre-MiCASSA levels -- a freeze on funds for ICFs/MR.
VOR is concerned that the actual effect of a mandatory MiCASSA will be the elimination of necessary, but Medicaid-optional, services for citizens with severe and profound mental retardation, due to the expected cost of implementing the MiCASSA entitlement.
To be eligible for MiCASSA, an individual must be eligible for medical assistance and either nursing facility care or services in an ICF/MR. These eligibility requirements are exactly the same as in a 1997 version of MiCASSA. At that time, the Congressional Budget Office (CBO) estimated that 8 million people may be eligible. Assuming that only 2 million would actually request the benefit, CBO estimated an annual federal cost of $10-20 billion.
For States to accommodate this increase in mandatory Medicaid expenditures, funding for optional Medicaid programs, such as the Home and Community-Based Services (HCBS) waiver and ICFs/MR, and other state sponsored services, will have to be cut. Quality and availability will suffer. The maintenance of effort provision, described above, will not help ensure adequate funding and quality of care as the years pass and the cost of care rises, while funding remains frozen at pre-MICASSA levels.
There is a compromise that would better carry out the intent of MiCASSA to expand community-based personal attendant care services. Personal attendant care services are already available through the optional Medicaid Home and Community-Based waiver program. Through a coordinated approach, Congress and the Administration should consider initiatives that address expanded personal attendant care certification, wages, training, and quality of supports. This sort of effort — which allows State and federal policymakers to consider the expansion of all optional Medicaid services in a way that reflects service needs rather potentially harmful mandates — is consistent with the spirit and the letter of the New Freedom Initiative.
Those who stand to be hurt by the misdirected good intentions of MICASSA are the most fragile of our nation’s citizens: People with severe and profound mental retardation who are medically fragile and/or experience significant behavioral challenges require the stability and quality of ICFs/MR and HCBS supports.
SUPORTING RATIONALE
Transferring
people from facilities to community settings will not save costs --
Focus must be on needs and choice |
A 2003 peer-reviewed cost comparison study of community versus institutional residential settings for people with mental retardation found that “community placements are not inherently less expensive than institutions” (Walsh, Kastner and Green, Cost Comparison of Community and Institutional Residential Settings: Historical Review of Selected Research, Mental Retardation, Vol. 41, No. 2, April 2003).
The study’s conclusion noted that all factors must be considered for “apples to apples” comparisons, including –
(a) comparable people and needs (e.g., distinguishing in comparisons between people with severe and profound retardation who are medically fragile, and/or have significant behavioral challenges, and those with mild and moderate mental retardation);
(b) comparable constellations of services;
(c) aggregate costs from all funding sources; and
(d) cost shifting which gives only the allusion of savings.
The researchers concluded that cost is the wrong question; rather, “the questions that need to be asked revolve around the individual (i.e., What does this person need? Where is the best place to provide for these needs?’ And ‘at what cost?’).” Simply put, the provision of necessary services must be based on needs. Once needs are identified, using the tools outlined in the cost comparison study, the total cost for care to meet these needs can be determined.
This is an enormously important study for policymakers because, if costs are comparable (unless quality is reduced), then policy should focus on serving needs rather than on physical location. It’s not very different than making a decision whether to go to a large university or a small college of live off campus. Each institution has its advocates and the ability of students to select which is best for them assures that each kind of school will continue to meet the unique needs of their respective students. The same holds true for people with mental retardation.
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People with disabilities
are not a homogenous group
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It is by design that Voice of the Retarded limits its constituency to persons with mental retardation. The needs of individuals with cognitive limitations are significantly different than the needs of individuals with physical disabilities who remain fully cognitively able to determine and self-direct their own care needs. While there will be proposals (such as the general need for adequate Medicaid funding) that will equally impact all individuals with disabilities, some proposals will have the affect of benefiting one segment of the population with disabilities at the cost of another.
Public policy does not always reflect the wide range of service needs. For example, some families of persons with severe and profound mental retardation who are also medically fragile and/or experience significant behavioral challenges who need and receive round-the-clock services in our nation’s ICFs/MR are concerned about dogmatic deinstitutionalization policies that ignore or expressly eschew the specialized and intense services required by these individuals who their family members believe can be found consistently only in ICFs/MR. VOR believes that the best solution is to permit individuals and, where appropriate, their families the right to choose among a full array of quality alternatives.
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The Olmstead Decision
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Included in the broad goals of The New Freedom Initiative is a consideration of Olmstead and its requirements with regard to community living. President Bush identified “swift implementation” of Olmstead as a priority in his New Freedom Initiative report. This declaration was followed up with the Olmstead Executive Order, released by President Bush on June 19, 2001.
To fully carry out the spirit and letter of Olmstead, the ruling itself must be understood. Unfortunately, it has been widely misrepresented.
Here are the facts: In Olmstead v. L.C., the Supreme Court said that “unjustified institutionalization” (emphasis added) of people with disabilities is a violation of the Americans with Disabilities Act (ADA). Specifically, the Court held that community placement is required when -
(1) the state’s treatment professionals determine community placement is appropriate;
(2) the individual does not oppose transfer from institutional care; and
(3) placement can be reasonably accommodated by the State taking into account the resources available, and the needs of others with mental disabilities. 119 S. Ct. 2176, 2181 (1999).
In clarifying its ruling, the Court was express in its recognition of varying needs and emphasized choice in residential settings, from institutional care to community and home care. The Court wrote, “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.” Olmstead v. L.C., 119 S. Ct. at 218. Moreover, nothing in the Olmstead decision negates the legally-established role of individuals and family members and guardians of people with mental retardation as primary decision-makers regarding services, supports and policies impacting their loved one's care.
Federal and state policies to implement Olmstead must, accordingly, focus on choice and quality and not force people against their will into a model of care based on ideology rather than need.
The Myth of an
“Institutional Bias” in Medicaid for Persons with Mental Retardation
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Some advocates are pushing hard to eliminate ICFs/MR or “institutions” for persons with mental retardation. Under the banner of Olmstead and “Real Choice,” they point to an alleged Medicaid funding bias in favor of institutional care. Given the steady decline in number of people residing in ICFs/MR and the rapid increase of people living in the community, the real bias is against ICFs/MR.
Medicaid funding for nursing homes residents is mandatory. By contrast, Medicaid funding for long-term care for people with mental retardation, whether it is for home and community-based waiver services (HCBS) or ICFs/MR, is optional. Here are some facts:
v Recipients -- On June 30, 2002 the number of Home and Community-Based Services (HCBS) waiver recipients (378,566) was 342% of (more than three times) the number of those living in all ICFs/MR (116,441). Between June 30, 1990 and 2002, the number of HCBS recipients grew by 850.3% (338,728 persons), while the number of persons in large ICFs/MR has decreased by 43% since 1987.[ii]
v Costs of Care – Anti-choice advocates say that that 70% ($57.4 billion) of all Medicaid long term care spending is for institutional care (ICFs/MR and nursing facilities) and only 30% is directed toward community-based services. These figures mix funds for two entirely different populations and ignore the fact that residents of ICFs/MR with severe and profound mental retardation who are medically fragile and/or experience significant behavioral challenges require intensive services that are costly to provide, regardless of setting.
(1) Of the 70% of Medicaid funds spent on long term care institutional services, only 19% ($10.9 billion) is for ICFs/MR services. As noted above, that 19% supports 116,441 people. There are only 32,195 individuals with mental retardation and developmental disabilities in nursing facilities.[iii]
(2) In large state-operated ICFs/MR, 79.7% of the residents have profound (63%) or severe (16.7%) mental retardation. Nearly half (47%) of these same residents have two or more additional conditions, and the majority need help walking, toileting, eating, dressing and/or communicating verbally.
(3) A peer-reviewed cost comparison study shows that cost of care will be roughly equal across settings if all cost factors are taken into account and all needed supports are provided[iv]. See “Transferring people from facilities to the community will not save costs – focus must be on needs and choice,” page 6, for additional information about this critically important study.
(4) The figures offered by anti-choice advocates do not take into account state-only funding for long term care services for persons with mental retardation, much of which is for community-based programs.
There is a broad spectrum of needs within the disability community. To ensure all needs are accommodated, Medicaid must continue to support a full array of support options, based upon individual need.
Federal and
state policies relating to choice
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The days of warehousing mildly and moderately retarded people in institutions are gone; roughly 80 percent of ICFs/MR residents are now people with severe and profound retardation who are often medically fragile and/or experience challenging, sometimes, dangerous behaviors. Most inappropriately placed people have long since been moved into the community.
Thanks to Medicaid, and the accompanying hundreds of pages of regulations, the term “institution,” which conjures up visions of people chained to beds, no longer applies. For families of the residents of ICFs/MR setting, the term “institution” no longer applies. They are developmental or training centers. They are homes for their family members, with well-trained and caring staff and experts who provide quality care. If the government helps assure quality care in a range of residential settings, including community-based care and ICFs/MR, then the families and guardians of people with severe and profound mental retardation will have the choices necessary to make sure their relatives have the best quality of life possible.
VOR is wary of community-only initiatives because most of these state efforts have resulted in the closure of facilities for people with mental retardation and their forced movement into the community, over the objections of family and guardians. Too often the result has been disastrous for those moved, as they have suffered abuse and death.
The federal focus on community living has raised our antenna.
VOR supports community-oriented programs to the extent they strengthen the home and community-based system of care for people who need and want that level of care without diminishing the availability of ICFs/MR services. However, as mentioned, it has been our experience that the pursuit of enhanced community services often comes at the expense of the ICFs/MR option and that placement in the community, without regard to preparedness and choice, is often blindly pursued.
To the credit of the U.S. Department of Health and Human Services, there has been some acknowledgment of the need to enhance the community-based infrastructure to assure its preparedness to safely and compassionately serve those transferring from facilities and the hundreds of thousands on the waiting list for community services (e.g., the demonstration proposal to focus on recruiting, training, and retention of direct service workers; and quality initiatives relating to community programs within the Centers for Medicare and Medicaid Services).
By and large, however, debates revolving around community v. institutional care seem to gravitate toward a place where a choice between the existence of one or the other becomes central to the debate. It does not have to be that way. Both settings are needed.
If federal and state policies result in the closing of institutions, the result will be fewer choices for people with mental retardation and longer waiting lists because there will be no cost savings from moving people from institutions into the community – unless their level of care is reduced below what they need to enjoy safe and productive lives.
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Conclusion
Conclusion onclusion
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Public policy should focus on ensuring the maintenance of existing high quality programs for persons with mental retardation and other disabilities, as well as expanding services to those on waiting lists. The focus must be choice based on need. If quality options are created (and no service option eliminated), then people with disabilities and their relatives and guardians will truly be able to pick what is best for them.
[i] In over 20 states, the displacement of persons from ICFs/MR to community settings has caused system-wide, community-based abuse, neglect and death as shown in media investigative series, peer-reviewed research, state audits and special reports.
[ii] Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2002, University of Minnesota (June 2003).
[iii] National Investment in Medicaid is Critical to People with Mental Retardation, Cerebral Palsy, and Related Disabilities, The Arc/UCP, 2003.
[iv] “Cost Comparisons of Community and Institutional Residential Settings: Historical Review of Selected Research,” Mental Retardation, Vol. 41, No. 2 (April 2003)
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VOR * 836 S. Arlington Heights Rd., #351 * Elk Grove Village, Illinois * 60007 877-399-4VOR ph. * 847-258-5273 fax * tamie327@hotmail.com |
