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Budget & Appropriations HIPAA Housing Medicaid Olmstead & Community Integration Workforce Shortage | Hot Links | National Advocacy Campaign
August 24, 2001 New Freedom Initiative Group To Whom It May Concern: On behalf of the American Network of Community Options and Resources (ANCOR) and its 700 private providers of supports to more than 150,000 individuals with mental retardation and other disabilities, thank you for the opportunity to comment on the President’s Executive Order 13217 and the efforts underway by selected Federal agencies to evaluate policies, programs, statutes, and regulations to improve the availability of community-based alternatives. First, ANCOR applauds the President in issuing his Executive Order and in committing the nation to community-based alternatives for individuals with disabilities. This order, and President Bush’s announcement of his New Freedom Initiative within the first few weeks of assuming office, are important signals to individuals with disabilities, their families, providers of supports, and to the nation that it is in the best interests of all Americans to include individuals with disabilities in the mainstream of society. This recognition is in keeping with ANCOR’s belief that people with mental retardation and other disabilities have a right to meaningful participation in community life. Furthermore, ANCOR believes that each individual should be offered opportunities to enhance and increase informed decision making and self-direction throughout a spectrum of expanding and continuing choices concerning: where one lives and works, ANCOR members believe our shared role is promoting full participation that involves a person-centered approach of respect and sensitivity for those involved. We accept this shared responsibility in making affirmative efforts to advocate for systems change and to gain the necessary resources to benefit individuals with disabilities. We also believe that the Federal Government must collaborate with all stakeholders—including providers—to promote a more effective and efficient system of delivering long-term services and supports for people with disabilities. The Federal Government must allow private providers who receive public funding to advocate on behalf of people with mental retardation and other disabilities and should expand the partnership with providers, people with disabilities, and their families. Toward these ends, and with the hope of continued opportunities to work closely with this Administration, ANCOR submits the attached comments on barriers to community alternatives and recommendations. ANCOR believes that actions to address such barriers are all dependent upon the nation’s will to resolve statutory, regulatory, public policy and practice that intentionally or unintentionally impede individuals with disabilities from the opportunity to live close to their families and friends, to live more independently, and to participate in community life. ANCOR also believes that the Federal Government, States, and localities must commit the necessary resources to achieve these ends. ANCOR believes that the nation possesses the will, that President Bush is committed to leading the nation, and that this Administration will demonstrate this commitment by proposing legislative changes and needed Federal funding in his forthcoming FY 2002 budget proposal. Sincerely, Suellen R. Galbraith
Comments on Barriers to Community-Based Alternatives for Individuals with Disabilities ANCOR has identified the following barriers to implementation of the Olmstead decision and the President’s commitment to community alternatives and call for an evaluation of statutes, regulations, policies, and practices. ANCOR believes that this request for public input represents a significant step forward in what should be a continuous look at Federal, state, and local impediments to full participation by individuals with mental retardation and other disabilities in the mainstream of American society and a beginning dialogue with consumers and their families, providers, and government officials. Barriers and Solutions Until this nation truly commits to community alternatives (through
law, regulation, and funding) and determines how community supports need to
work (more flexibility, more accountability for the important outcomes, more
autonomy on meeting the personal needs of each individual), it will be difficult
to improve community-based supports and services. General Overarching Recommendations Recommendation: Maintain the individual entitlement to a full
range of Medicaid health and long-term supports and services for eligible children
and adults with disabilities, opposing Medicaid block grants, per capita caps,
or other mechanisms that would make reductions to services and protections for
people with disabilities. Recommendation: Ensure continuation of administrative focus on
people with mental retardation and developmental disabilities (e.g., Administration
on Developmental Disabilities and President’s Committee on Mental Retardation)
to ensure that the unique characteristics and needs of people with developmental
disabilities are considered in the development of public policy regarding health
care and long term services and supports. Specific Barriers and Specific Solutions Inadequate Infrastructures: The U.S. Supreme Court decision in Olmstead and the President’s commitment to community alternatives in his Executive Order will be hollow victories for individuals with disabilities, their families, providers of supports, and the nation without recognition and immediate action to address the following four overarching barriers that dictate the nation’s infrastructure and determine the nation’s current preparedness to provide community alternatives in the face of growing demands: Labor Shortage: Recruitment and retention of adequately paid
and trained community direct support professionals (and related personnel).
The nation’s critical labor shortage—in particular, the crisis in
recruitment and retention of adequately paid and trained community direct support
professionals, job counselors, and job coaches—adversely affects the capacity
of providers to offer the community supports, and ultimately leaves the states
without the necessary infrastructure to deliver on the commitment to community
alternatives. This severe shortage— fueled by vastly underfunded wages/benefits,
burgeoning demographics, movement away from institutional care to individualized
supports, and a record low unemployment rate—will undermine the quality
of long-term supports and services for individuals who currently need such supports,
as well as reduce the possibility of services who will become in need of them
in the very near future. The problem of the incredible shrinking workforce and
the preparedness of this nation to provide long term supports to individuals
with disabilities and the elderly may well be the most important challenge facing
America in the 21st Century. ANCOR calls upon this Administration and Congress
to make this a top priority and to begin immediately to address the challenge
of recruitment and retention of quality direct support professionals. COMMUNITY LIVING
Long Term Supports: A major challenge for the nation in the 21st Century is the increasing demand for long term supports and services. This challenge includes the challenges of creating a national system, its financing, creating appropriate and adequate infrastructures, ensuring adequate reimbursement rates, and developing a quality workforce. Recommendation: President Bush should convene a White House summit
in early 2002 on community long-term care/supports, identify the nation’s
current state of preparedness to meet this important challenge in the 21st Century,
identify barriers, and develop recommendations for meeting the challenges. The
summit must include individuals with disabilities, the elderly, families, providers,
governors, state and local public policy-makers, members of Congress, and Federal
agencies. Barrier: Current difficulties in assuring adequate direct support staff recruitment, retention and competence are widely reported as the single biggest barrier to the growth, sustainability and quality of community services for people with developmental disabilities. (Hewitt and Lakin, Issues in the Direct Support Workforce and their Connections to the Growth, Sustainability and Quality of Community Supports, Research and Training Center on Community Living, University of Minnesota, May 2001). Just as there is a nursing shortage, there is a shortage in the workforce available to provide direct community supports to non-elderly individuals with disabilities and their families. However, in comparison to the nursing/aides shortage, little attention has been paid to the direct support professional shortage by the Federal Government, Congress, states, and the public. This national shortage threatens quality of supports to individuals with disabilities, undermines expansion of community alternatives, and places providers at risk to their customers and state and Federal funders. Concern about recruiting, retaining and training direct support professionals who can meet the needs for community supports services for individuals with mental retardation and other developmental disabilities is not new in the United States. ANCOR members have long grappled with the recruitment and retention of direct support workers and have over the past thirty years focused on this issue. Studies have shown that community direct support staff turnover rates have consistently been between 45% and 70%. However, these problems have become increasingly severe, threaten the viability of community services, and challenge avowed commitments on the part of national, state, and local governments to assure access to community supports for growing numbers of persons with disabilities and their families. Changes in the U.S. economy, labor market and the demographic make up of America have contributed to these workforce problems. In addition, the move toward inclusive community supports and away from institutional services has had serious effects on the nature and problems associated with direct support and in the roles and expectations of direct support professionals. What was once a problem viewed primarily as a service provider agency problem must today be viewed as a broad systems problem for which there are no easy solutions and in which all entities that have played a part in promising a place in the community for persons with developmental disabilities must play a role in addressing issues that threaten that promise. (Hewitt and Lakin) This nation has undertaken efforts in the past to address teacher, police, military, and nursing shortages. During the late 1960s-1970s, the nation witnessed a significant policy shift in securing a free and appropriate education for all children regardless of their disability under P.L. 94-142—now IDEA. This policy decision to include children with disabilities in mainstream classrooms was taken—in part—to prevent institutionalization. The obvious question is: Why is it that, as a matter of public policy, the government is willing to ensure that teachers are paid a living wage, but those who provide an array of supports to adults with disabilities throughout their lifetime, are not entitled to commensurate wages and benefits? The lack of adequately compensated, trained, quality direct support workers undermines consumer choice, impedes the ADA integration mandate, and is a barrier to the unnecessary institutionalization of individuals with disabilities. Providers of community supports and their direct support workers provide a national service to individuals with disabilities, the elderly, and their families. Without immediate recognition of this national service and steps taken to alleviate this problem, America is ill-prepared to meet one of the greatest challenges in the 21st Century. Increased Medicaid funding, immediate state action to increase reimbursement rates, and monitoring and enforcement by CMS, HHS, OCR, and Justice of Federal Medicaid and ADA statutes to ensure adequate reimbursement rates to providers is needed. Until and unless community provider reimbursement rates that determine direct support worker wages and benefits are competitive with state-operated services and prevailing private wages, a continued disincentive will exist to expanding community alternatives and the ADA’s integration mandate. This disparity in community wages is ripe for Federal litigation and places increased responsibility upon HHS, CMS, OCR, and Justice to ensure that states are not violating Medicaid requirements, the ADA, and Section 504. Although wages and benefits are a critical component of solving this shortage, a confluence of factors dictates that combined national, state and local initiatives are needed to address this growing problem. There is a serious lack of data on available workforce, paid and informal caregivers, workforce needed to address current need for long-term supports, challenges to recruitment and retention of quality direct support, and how to meet the growing need in light of demographic explosion. However, the Federal government must take the lead role in coordinating the efforts of multiple agencies—including Health and Human Services, Department of Labor, Department of Education, Immigration and Naturalization Services, Housing and Urban Development, Transportation, and Treasury—and involving state officials, and the private sector in ensuring that all sources of assistance can be directed to addressing this challenge. Barrier: Recent research is leading policymakers more and more in the direction of emphasizing home and community services in residential care alternatives to nursing homes such as adult foster care homes…. (Pamela Doty, Cost Effectiveness of Home and Community-Based Long-Term Care Services, Office of Disability, Aging, and Long-Term Care Policy, HHS, June 2000). However, current tax law is a barrier to foster care alternatives that HHS supports. There currently exists an inequity in Section 131 of the Internal Revenue Code that does not extend the same tax exemption for all foster care providers of services to children and adults. Section 131 does not permit exemption of foster care payments to foster care families unless to children if placed and paid by government entities or licensed non-profit placement agencies. State and local governments have turned increasingly to private non-profit and for-profit licensed agencies to screen, select, train, and administer foster care to children and adults with disabilities—replacing government services with the cost-effective private sector services. However, because of this inequity (based on 30-year old legislation that did not foresee most children and adults with severe disabilities living outside of institutions), the foster care family is not entitled to the same tax exemption if the child or adult placement and payment (paid by the government through the private sector) is made by these private agencies which are licensed by state and local government. Legislation correcting this inequity has unanimously passed the House. The Senate has yet to take up similar legislation (S. 844 or S. 938). Barrier: The Department of Labor proposed January 19th revising the companionship regulation under the Fair Labor Standards Act by revising the companionship exemption, reducing level of training to meet the definition, and eliminating the use of the companionship exemption under the Fair Labor Standards Act. The Department extended the comment period to July 24th and is currently reviewing comments. ANCOR provided extensive comments on the DOL proposal, opposing these changes. Companionship services are a viable cost-effective and efficient alternative to institutional care; are a preferred choice of some individuals with disabilities and their families; permit private providers to provide individualized supports on a flexible basis without costly, burdensome record-keeping to the provider, consumer and employee; support part-time and full-time labor in a declining labor market; and, are consistent with the Olmstead decision and President’s Executive Order and commitment to community alternatives. Barrier: The definitions of some personnel categories (e.g., QMRP) are outdated, drive costs in inappropriate ways, and often prevent rather than encourage person-centered approaches to service. Recommendation: The Administration and Congress must establish
this workforce shortage as a top national policy priority. Barrier: States determine the reimbursement rates for the provision of supports and services. Across the nation, these rates are higher for state operated institutions. Without adequate financing of community supports, the victory of Olmstead and the President’s Executive Order committing the nation to community-based alternatives will be undermined. Inadequate rates are barriers to fulfillment of and violations of Section 504, ADA, and Title XIX laws. Barrier: One of the stated purposes of Title XIX of the Social Security Act is to enabl[e] each State...to furnish...rehabilitation and other services to help such families and individuals attain or retain capability for independence or self-care. States failure to assure that payments for community-based services are consistent with efficiency, economy, and quality of care and are sufficient to enlist enough providers to ensure access to services result in differential payments that discourage the establishment of a continuum of quality, community-based supports, thus relegating Title XIX recipients to expensive yet inadequate and unnecessarily restrictive state institutions where people do not achieve independence or self care. Community providers do not and are unable to serve people with severe disabilities unless they are able to pay wages and benefits to command staff who are competent and trained to provide supervision, treatment and support to people with severe disabilities so that they can live successfully in the community. Due to the states’ inequitable system of payment, people with disabilities remain isolated in large state institutions, or are at risk of moving to institutions. Barrier: Title XIX requires states to provide such methods and procedures relating to the utilization of, and the payment for, care and services available under the plan...as may be necessary to safeguard against unnecessary utilization of such care and services and to assure that payments are consistent with efficiency, economy, and quality of care...(U.S.C. Section 1396)a(a)(30)(a)) Title XIX (42 U.S.C. Section 1396a(a)(30)) provides that a state plan for medial assistance must...provide such methods and procedures relating to the ...payment for care and services under the plan...as may be necessary...to assure that the...payment for care and services under the plan...as may be necessary...to assure that payments are consistent with efficiency, economy, and qualify of care and [equal access]. This provision of Title XIX has been held to require that 1) states consider both the effects of their provider payment rates upon the efficiency, economy, and qualify of care, and 2) the rates set and paid actually satisfy those substantive requirements of the Act. In requiring states to provide methods and procedures of payment to safeguard against unnecessary utilization, Congress intended to provide suitable alternatives to institutional care. Far from safeguarding against unnecessary utilization of institutions, states’ payment methods promote their unnecessary utilization. People with disabilities suffer from this overutilization by remaining confined in institutions. States’ failure to establish an equitable rate structure that adequately compensate community placements, nullifies the purpose of Title XIX and of this particular provision as well. ADA regulations (28 C.F.R. Section 35.130(b)(3) & (3)(I)) prohibit public entities from utiliz[ing] criteria or methods of administration...[t]hat have the effect of subjecting qualified individuals with disabilities to discrimination on the basis of disability. States discriminate against people with disabilities by utilizing criteria and methods of administration that discriminate by administering wage, benefits, and payment policies for community-based services that dictate low wages for direct care and professional staff—with the effect of rendering integrated, community-based programs a non-option for people with disabilities even though such programs constitute the most integrated setting appropriate to their needs. States’ criteria and methods of administering its payment structure for developmental disability services cause the continued, unnecessary segregation and isolation of people with developmental disabilities in large state institutions by failing to set payments that allow community providers to pay direct care staff a competitive wage substantially equal to the wages of their counterparts in state institutions. By utilizing criteria and methods that create a disparity in wages and benefits, states prevent the development of community programs and make the creation of additional integrated, non-isolated community residential programs all but impossible. Section 504 (45 C.F.R. Section 84.4(b)1()(iv); 28 C.F.R. Section 41.51(b)(1)(iv)) prohibits a public entity from [p]rovid[ing] different or separate aid, benefits or services to handicapped persons or to any class of handicapped persons that is provided to others unless necessary to provide services that are effective. The population of state institutions for people with developmental disabilities tends to be persons with severe disabilities. These individuals remain isolated in institutions because of states’ chronic underfunding of wages and benefits for staff in community-based services for people with severe disabilities. There is no correlation between states’ rate structures, which encourage institutionalization and segregation, and the quality of services in the institutions. Thus, states discriminate against people with developmental disabilities through their administration of methods of payment that deny community-based services to people with severe disabilities or challenging needs. U.S.C., Section 1396(a)(30)(A) requires that state payment rates for Medicaid services be sufficient to make providers available to Medicaid beneficiaries to the same extent that they are available to the general population. Recommendation: States must be required to establish methods
and procedures for the payment of community supports that do not create a disparity
in wages between institutional and community workers. Barrier: The Medicaid program is the primary source of community-based services and supports and the primary source of health care for many people with disabilities. However, home and community-based supports are optional Medicaid services. The only mandatory long term care Medicaid service that states are required to offer to qualified individuals is nursing home services. Barrier: The finances that support services for individuals with mental retardation and developmental disabilities come from a combination of Federal and state sources. In 1998, the total of combined Federal state funding on MR/DD services was $25.6 billion. Home and community-based waiver spending comprised 28% of total MR/DD spending nationally; ICF/MR spending constituted 39% of the total; and other Medicaid spending (for example, on clinic and rehabilitative services, case management, personal care) constituted 7%; and other Federal funds (for example, SSI payments, Social Services Block Grant funds) constituted 6%. The balance of total MR/DD spending in 1998—$5.1 billion (20%)—consisted of unmatched state funding. However, fifteen states had higher percentages of unmatched state funds than the 20% national average. (Braddock, Mental Retardation, AAMR, June 2001) Barrier: The Federal/state collaborative nature of Medicaid creates a wide variation in eligibility, scope, exten, and duration of services and supports offered, statewideness, and reimbursement levels among states and even within the same state (due to some states devolution of administration and funding to counties). Because of the variation in political, social and economic characteristics of states and locales, Mediaid benefits vary. Some states lack the political will to provide the state matching share necessary to provide needed services—resulting in the so-called enriched Medicaid programs, but leaving most to be severely underfunded and even producing neglected systems in light of more popular and universal services (education, roads). Barrier: The Medicaid program contains an inherent conflict of interest in the Federal/state partnership. States manage, authorize, and bill for services, thereby competing for limited service dollars necessary to support individuals with disabilities. State government involvement in service provision should be limited—available only at the discretion of the individual with disabilities as a choice among other providers—or because no other provider exists. Barrier: As a Federal/state collaboration, Medicaid avoids dealing directly with state-determined funding—leaving community service providers to try to meet Federal expectations in quality assurance and abuse/neglect prevention without the resources to do it effectively. Barrier: Section 1902(a)(10)(d) of the Social Security Act created mandatory coverage of nursing home services and Section 1905(d) created optional coverage of Intermediate Care Facility for the Mentally Retarded (ICF/MR) services. Both are institutional settings. However, Medicaid law allows states great latitude to offer individuals a wide range of home and community services through HCBS waiver programs. States do not exercise the flexibility inherent in Medicaid law to expand home and community-based services. This institutional bias should be eliminated by establishing home and community-based services in each state Medicaid plan. In addition, Medicaid requires that persons with disabilities who are determined likely to require the services of an ICF/MR be informed both 1) that feasible alternatives under the Medicaid Home and Community-Based Waiver Program are available under the waiver (42 U.S.C. Section 1396n(C) and 42 C.R.R. Section 435.217) and 2) that the affected person with a disability him- or herself has a choice between institutional and community services (42 U.S.C. Section 1396n(c)(2)(C). States have chronically underfunded community services provided under the waiver. This underfunding has resulted in the compelled, unnecessary institutionalization of thousands of persons with disabilities who, contrary to law, have been given no meaningful choice between segregated and isolated institutions and appropriate, integrated, non-isolated community services because no such community services exist. Barrier: Due to the Federal/state collaborative nature of Medicaid, reimbursement under waiver programs varies from state-to-state—both in the outdated formula for determining the FMAP percentage, as well as in the actual use of waivers by the states. Barrier: Eligibility standards for community services are complex, not viewed as the entitlement envisioned, a disincentive to a creative, person-centered approach and, therefore, drive the funding in unnecessary directions and even contrary to the evolving philosophy of self-direction and individualization. Recommendation: The President should propose the elimination
of the home-and community based waiver as a waiver service in its FY 2003 budget
and propose home and community based services as a mandatory Medicaid service
to be included in the state plan. Barring such services being mandatory, the
Administration should propose that—at minimum—home and community-based
services should be an optional service. Barrier: Many families with children with disabilities have incomes too high to qualify for Medicaid eligibility, but are unable to afford or even locate health insurance that would provide the necessary coverage needed for their child. In fact, some families are forced to relinquish custody to the state just to obtain the necessary health and health-related services. Barrier: Current law does not extend full Medicaid and SSI coverage to all Americans, including those with disabilities who live in Puerto Rico, the U.S. Virgin Islands, Guam and American Samoa. Therefore, there is no community-based system available for individuals with mental retardation, for example, in Puerto Rico. Even though the government in Puerto Rico is under a Court order by the U.S. Justice Department to create an array of community-based residential alternatives available to more than 800 individuals living in substandard conditions, no concrete steps have been taken to rectify this situation. Recommendation: Create an option in state Medicaid plans for
families of children with disabilities to buy into Medicaid if private health
insurance is not available or does not meet their needs. Support the Family
Opportunity Act of 2001 (S. 321/H.R. 600) introduced in the House and Senate.
Barrier: States have not uniformly moved swiftly to implement the Supreme Court’s decision in Olmstead. Nor have states uniformly established working groups that include all of the relevant stakeholders necessary to address the real barriers to community alternatives and the solutions to develop real systems change.
Recommendation: HHS/CMS should publish a template/guidance to
assist states and state planning bodies to address all relevant issues in creating
the state’s on-going comprehensive, effectively-working plan. Recommendation: HHS/CMS should establish timelines for assessing
states’ Olmstead-related activities and provide technical assistance to
states in those areas considered weak—in particular community provider
capacity, recruitment and retention of direct support professionals and job
counselors/job coaches, adequate reimbursement rates, housing, and transitional
costs related to fixed capital investments spurred by Federal and state decisions
regarding institutional services. Medicaid and CMS Structure ANCOR applauds recent announcements to restructure CMS and make it more responsive to all of its publics—including providers. However, it must first be noted that traditionally Medicaid has been a step-child of the agency—with emphasis and resources placed on Medicare. Also, historically, the agency has been insular and operated with limited contact with the ultimate beneficiaries of services and stakeholders crucial to the delivery of services. Although the Medicaid program is a joint Federal/state partnership, it is time that CMS recognize all of the partners in the administration and delivery of Medicaid-funded benefits and supports. This kind of systemic change must begin at the top and be infused throughout the organization. While at times there appear to be competing interests between stakeholders, sound public policy, access to quality services, good administration, and innovation demand that all interests are brought to the table with a healthy respect for the full range of perspectives necessary to implement a complex program. Private providers of long-term supports and services to individuals with disabilities must be included as full partners. Barrier: There is no formal mechanism to continually identify barriers to community-based alternatives. While the HHS public comment period is a good first step, there is limited time for consumers, providers, and advocacy organizations to thoroughly respond to the review of federal policies that impede community alternatives. Barrier: Since the creation of Medicaid in the mid-1960s, ICF/MR legislative authority in the 1970s and issuance of final ICF/MR regulations in 1988, and addition of the HCBS waiver program in the early 1980s, there have been major shifts in the field of developmental disabilities and disabilities. An incremental, piece-meal approach to aligning Medicaid with these shifts is not effective. CMS must take an across-the-board evaluation of all of Medicaid and align the program (statutorily, regulatorily, and fiscally) with these shifts. Barrier: CMS interpretations vary from region to region regarding quality, utilization of resources, which service models are appropriate, and even the purpose of Federal Look-Behinds of ICFs/MR and waiver reviews. Consistency must be developed. Barrier: Limited Headquarters and Regional Office staff specializing in MR/DD and disabilities with combined roles of compliance, policy development, and technical assistance. Although it is always a challenge for Federal agencies to balance multiple roles of enforcement and technical assistance, there is insufficient number of CMS staff placed upon a policy and funding agency with the scope of Medicaid and Medicare. Barrier: The state flexibility of Medicaid leaves important decisions open to misunderstandings and misinformation. It is not uncommon for state officials to report that something is not permitted under Medicaid law, when the law and regulations, and CMS headquarter or regional staff report differently. This confusion leaves consumers, families and providers at a lost and in some cases at risk. Barrier: Until more recently, CMS has not involved private providers of supports to people with disabilities as partners in developing policy or engaging providers in solutions to problems. Historically, only state officials/representatives have been viewed as partners. CMS must operate with a principle that to achieve a certain outcome, all stakeholders engaged in that outcome must be involved from development to education to compliance—with everyone on the same page, with the same information and same expectations—in order to achieve that outcome. Barrier: While there is much in common among individuals with disabilities in the struggle to gain access to needed supports, there are also important differences. The needs of individuals with disabilities vary, vary over their lifetime, and vary based on the nature of their disability. Public policy and service delivery must not assume a one size fits all approach to individuals with disabilities. Individuals with mental retardation and other developmental disabilities must be recognized has having unique characteristics, individual limitations and individual capabilities. There are also important distinctions that must be made in terms of individualized services that encompass more than activities of daily living—distinctions that must recognize and adequately fund services to address instrumental activities of daily living. These differences also extend to providers of Medicaid services. Hospitals, nursing homes, and physicians may all be Medicaid providers, but there are major differences that exist between them and providers of supports to people with mental retardation and other disabilities—providers and a service delivery system statutorily, historically, and financially routed to state service delivery system which is rapidly evolving into private, individualized benefits and services. These differences must be recognized by CMS and within restructuring efforts. Barrier: Medicaid law, regulations, guidance, and official interpretations are voluminous and complex. Add to this mix wide state variance, and it is nearly impossible for consumers and providers to have a fix on the Medicaid program. Multiple Medicaid regulations are issued throughout each month in the Federal Register, and frequently with little or no notice of their issuance unless of a politically or controversial nature. Barrier: Greater educational resources to beneficiaries/public and technical assistance to providers have been devoted to the Medicare program than to the audiences vital to the Medicaid program. States can not be the only partners and receive the only technical assistance on changes to the program. The Federal government can not expect states to pass along information—it simply does not happen. If there are expectations for providers, when providers are to be held accountable for changes in programmatic areas, they must receive commensurate technical assistance. For example, if zero tolerance for abuse and neglect is the expectation, then providers on the front line should be directly included in efforts to reach that goal. Recommendation: CMS should improve its strategic planning regarding
Medicaid. It should outline a series of areas to be addressed, widely publish
the outline, invite public comment, and create working groups that engage outside
stakeholders. Areas for consideration include: enhancing outreach to Medicaid
beneficiaries and providers, enhancing education materials and methods of distribution,
reducing and simplifying paperwork burdens on providers, simplifying regulatory
requirements, and strengthening and matching desired public policy objectives
(self-direction) with regulatory requirements and compliance reviews. Medicare Recommendation: Extend the availability of Medicare services
for people who go/return to work indefinitely (beyond the currently available
8.5 years) in a manner similar to the extension of Section 1619 Medicaid coverage
for as long as the individual continues to need Medicare services in order to
continue working. HOUSING
Although the Supreme Court did not specifically mention housing in its Olmstead decision when it ruled that unnecessary institutionalization is a violation of the ADA integration mandate, the ability for individuals with disabilities to live in the community is predicated on access to decent, affordable, and accessible housing. President Bush’s Executive Order 13217 and the U.S. Supreme Court’s decision in Olmstead will be a hollow victory for individuals with mental retardation and other disabilities without access to housing in the community. ANCOR, in collaboration with other national organizations, recently released a second report on the housing crisis facing people with disabilities. This report, Priced Out in 2000: the Crisis Continues, accurately documents the serious housing affordability problems that people with disabilities receiving SSI benefits confront in today's rental housing market. Unfortunately, it also documents that these problems have become much worst during the past two years. Despite the wake-up call sounded by the first publication (Priced Out in 1998), Federal and state policy makers, as well as private and public housing providers, have still not responded. The current demand for federal housing assistance for people with disabilities will only increase in the years ahead as adults with disabilities, who live at home with elderly parents need housing; as students with disabilities graduate from school and seek a place to live in the community; as people continue to face homelessness; and, as states respond to the integration mandate upheld by the U.S. Supreme Court Olmstead decision. The development of affordable housing is a critical piece to the integration of individuals with disabilities into typical neighborhoods and communities. The following factors contribute to individuals with disabilities being unable to locate and secure decent, affordable, and accessible housing of their choosing. Barrier: This access to housing is a product of (1) the financial capabilities of individuals with disabilities; (2) the available supply and future production of public and private affordable housing; (3) loss of approximately 218,000 units of Federally subsidized public and assisted housing available to individuals with disabilities as a result of elderly-only designated housing policy enacted by Congress in the early 1990s; and (4) historical formal and informal discrimination toward individuals with mental retardation and other disabilities in rent or purchase of housing, and the location of group living arrangements as a result of Not In My Back Yard (NIBY) syndrome and local zoning policies. Barrier: People with disabilities are, unfortunately, a disproportionately large part of the low-income population. However, there has been scant Federal, state, and local attention to the housing needs of individuals with mental retardation and other disabilities. Many individuals rely upon SSI as their sole source of support. On a national average, it takes 98% of SSI to rent an efficiency or single-bedroom. In some areas it takes more than 120% of SSI to rent. Individuals with disabilities are often limited in their housing choices due to the fact that it takes three or more individuals to afford housing. Barrier: In most areas of the country, there are long waiting lists—as long as five years—for Section 8 housing assistance. Barrier: Section 8 vouchers are unusable in many communities because of the lack of housing stock, housing that is substandard, or housing that is not accessible for individuals with physical disabilities. Barrier: The funding is inadequate for Section 811 housing that adds to the stock of available housing. This competitive grant program receives far more applications—despite its complexity and bureaucratic red tape—than available funding. The allocations are by state, with some states receiving only 10-20 units available to all nonprofits in that state. Barrier: The application process, up-front costs, intensive manpower and resources to complete application and award processes, and length of time to closing and development deter many nonprofits from applying to HUD. Barrier: There are limited Federal funds available to make housing accessible. The options for using existing housing stock to make it accessible and bring it up to code standards are too complex and not useful. Barrier: Local and federal housing programs for low-income housing administered with HUD funding favor larger or multi-family settings over smaller, individualized and integrated housing. Barrier: ANCOR does not believe that states have adequately addressed housing in their response to Olmstead, nor sufficiently involved private providers of supports to people with disabilities in their efforts to address this critical housing shortage. Barrier: By statute, Medicaid funding cannot be used for room and board except in institutional settings. However, the Medicaid program is the primary source of funding for long-term supports to individuals with disabilities. HUD should work with CMS to expedite the use of Medicaid home and community-based dollars with HUD programs. Recommendation: ANCOR believes that the solutions to the housing
problems of people with disabilities lie within the federal government's subsidized
housing programs and the expansion of their partnership with local service and
housing providers. Recommendation: The Federal Government has a role in assuring
this access through existing federal housing policies, mainstream housing resources,
targeted housing resources, tax policies, and enforcement of the Fair Housing
Amendments Act’s prohibition against discrimination against individuals
with disabilities and service providers in securing housing in the community.
HUD is the federal agency charged with helping to ensure that people with low-incomes—including
individuals with disabilities—have access to decent, safe, and affordable
housing. Therefore, HUD must ensure housing resources for individuals with disabilities
receive equal attention within the department; their needs are addressed by
communities and states that receive federal housing funds; and, that they receive
their fair share of federal housing resources. Recommendation: The Administration should identify the housing needs of individuals with disabilities as a critical component of its commitment to community alternatives by recommending in its FY 2003 budget funding for 10,000 new targeted Section 8 vouchers to be used solely to assist with Olmstead implementation—individuals in institutions who want to live in the community and to promptly address the needs of individuals on waiting lists who are in jeopardy of institutionalization. Recommendation: HUD could target recaptured Section 8 vouchers, dedicating them to the Section 811 Mainstream program or Olmstead implementation. Recommendation: The Administration should formulate new affordable housing production policies that include a focus on HUD's response to the U.S. Supreme Court Olmstead decision. Tenant-based rental assistance programs such as Section 8 cannot be the sole foundation of federal housing policy to assist households with incomes below 30 percent of median income. A balanced housing policy for people with disabilities and others at the bottom of the economic ladder must also include the construction of new rental housing through a new National Housing Trust Fund which targets people below 30 percent of median income. Federal efforts to assist states in implementing plans to downsize institutions and help adults with severe disabilities move into the community under the Supreme Court's Olmstead decision should not focus solely on small HUD programs that only serve people with disabilities (e.g. the Section 811 program, the Section 8 Mainstream and Designated Housing voucher programs). They should also focus on providing access to all of HUD's mainstream housing production programs, including HOME and Community Development Block Grant. Recommendation: HUD should ensure greater access for people with disabilities to all HUD generic programs and the housing planning activities of state and local government housing officials. People with disabilities should have the opportunity to benefit from all of HUD's initiatives, including tenant-based rental assistance, housing production initiatives, as well as homeownership. This means ensuring that people with disabilities receive their fair share of federal HOME and CDBG funding, and that the individuals with disabilities and providers of supports are active participants in the development of housing strategies within state and local Consolidated Plans. Special attention should be paid to the extremely limited incomes of people with severe disabilities to ensure that all programs are made truly "affordable" to people with incomes below 20 percent of the median. Legitimate HUD efforts to expand homeownership opportunities should not re-direct resources away from those with the lowest incomes who will continue to need rental housing. Recommendation: HUD should issue guidance to public housing authorities,
state and local public housing officials regarding the Olmstead decision and
how communities can and should revise local and state Consolidated Plans' needs
assessments to include the supportive housing needs of those individuals with
disabilities living unnecessarily in institutions. HUD should be asking local
and state housing officials to address in their ConPlan how the plan/amendments
and decisions regarding allocation of Federal funding support the Olmstead integration
mandate and community alternatives. This information should emphasize involving
private providers of supports, individuals with disabilities and families as
active participants in the process. The guidance should also be available on
the HUD web site. Recommendation: HUD must modernize and improve the Section 811
Supportive Housing for Persons with Disabilities program. The Section 811 program—which
creates a partnership with local nonprofit providers—has been poorly utilized
by HUD and needs major legislative reform as well as a substantial increase
in appropriations. An appropriation of $346 million for FY 2002 would restore
the program's funding level to the amount signed into law by the last Bush Administration.
In addition to restoring needed funding, HUD should work closely with disability
advocates and with Congress to ensure that Section 811 funding can be used more
flexibly to develop, rehabilitate, purchase, or rent small scale or scattered
site housing desired by people with disabilities. These legislative and regulatory
reforms are essential to speed up production, streamline the process, and eliminate
years of cumulative "red tape" and bureaucracy. Recommendation: All Section 811 tenant-based funds (Mainstream vouchers) should be provided exclusively to non-profit disability organizations rather than to PHAs who have demonstrated little interest or capacity to serve people with severe disabilities. To meet the needs of people with severe disabilities, a new non-profit administered Section 811 rental assistance program should be created so that the current practice of converting Section 811 tenant-based funding to Section 8 vouchers can be eliminated. Recommendation: HUD should expand its partnership with private, non-profit providers who demonstrate the ability to assist individuals with disabilities with Section 8 vouchers. Nonprofits awarded Mainstream Section 8 vouchers should be permitted to also apply for Section 8 fair share and targeted Section 8 vouchers that are currently available only to public housing authorities. Non-profit providers of services to people with disabilities have demonstrated their ability to locate and expand rental housing in the private market at a time when PHAs and assisted housing owners have reduced housing through elderly-only designation and when PHAs fail to identify the need of housing for individuals with disabilities and apply for vouchers targeted to them. Recommendation: The Administration should propose legislative
authority or use the Secretary’s waiver authority and Federal funding to
allow the downsizing of Section 811/202 housing. These programs, first begun
as loan programs for large housing projects at a time when large-scale housing
and economies of scale were the public policy response to de-institutionalization.
The Section 811 program was split off from the Section 202 elderly program and
converted into a capital advance grants program with operating subsidies in
the early 1990s. Many providers would like to convert these older, larger projects
into smaller, more typical family-style homes or to convert into integrated
low-income housing that includes individuals with disabilities. HUD could should
propose loan forgiveness and provide upgraded operating subsidies per unit to
allow providers to convert larger projects into smaller, integrated housing
in light of the current public policy regarding individuals with disabilities
and the nation’s commitment to expanding community alternatives. Recommendation: HUD should identify all generic and targeted housing programs that can benefit individuals with disabilities and publish a Primer on Federal programs and funding. This information should also be posted on HUD’s web site. Recommendation: Allowing individuals to use Section 8 assistance toward down payments, closing costs, and mortgage payments is a step in the right direction. Even with this assistance, many individuals who seek homeownership as a goal cannot afford to own their own homes because insurance, property values and taxes escalate beyond their limited incomes. HUD should work with states to make their Homestead Tax Exemption available to low-income individuals with disabilities. HUD should help increase the number of programs to finance mortgage buy-down and low interest loans available to individuals with disabilities, especially for those individuals below 50% of AMI. Recommendation: HUD must address and prevent housing discrimination, enforce the Fair Housing Act accessibility guidelines, and provide reasonable accommodation for people with disabilities in all HUD programs and policies and in the private housing market. HUD, as well as all recipients of HUD funding, should be held accountable for compliance with the Fair Housing Act Amendments of 1988 and Section 504 of the Rehabilitation Act of 1973, including the removal of all barriers and impediments which have a negative impact on the access of people with disabilities to affordable housing programs. Training and technical assistance should be made available to the disability community regarding the reasonable accommodation and reasonable modification provisions of the Fair Housing Act and Section 504. Steps should also be taken by HUD to ensure that people with disabilities are not being discriminated against when PHAs and private owners of HUD assisted housing seek to restrict occupancy to households age 62 and older. Recommendation: HUD should also work closely with the Department of Justice and the Department of the Treasury to ensure that people with disabilities have access to the units developed in federal Low Income Housing Tax Credit developments, including ending discriminatory practices such as the refusal to accept Section 8 voucher program participants. Recommendation: HUD leadership is needed to ensure the full compliance
and enforcement of the accessibility provisions of the Fair Housing Act in the
private housing market. Affordable and accessible housing is critically important
for people with mobility or sensory impairments. Even with historic low-unemployment rates, nearly 70% of individuals with disabilities who want to work are unemployed or underemployed. The enactment of the Ticket to Work and Work Incentives Act of 1999 holds out great promise in transforming Federal policy with its built-in disincentives that required individuals to choose between their Social Security disability eligibility with its critical link to Medicaid and Medicare coverage and employment. However, many working-aged individuals with disabilities are not perceived as part of the nation’s labor force. Inadequate Federal funding for private vocational and employment services and other Federal policies need to be reconsidered in light of disincentives for individuals with mental retardation and other disabilities in seeking a job and taking a job that may not work out. While Federal policies must be examined in light of barriers to employment, ANCOR cautions against creation of Federal policy that replaces an individual’s own assumptions with that of government assumptions about what constitutes work, a job, being productive, or contributing to society. As with other efforts to expand individuals’ opportunities, a one size fits all approach to vocational and employment services should not supercede the choices and goals of individuals with mental retardation and other disabilities and their families in determining which path to take. The individual’s choice should determine the employment and vocational services and outcomes. Medicaid Barrier: Many states have been slow to adopt Medicaid buy-in options under the Balanced Budget Act of 1997 and the Ticket to Work and Work Incentives Improvement Act of 1999 that encourage people with the most significant disabilities who receive Supplemental Security Income (SSI) to work or return to work without losing necessary Medicaid-provided supports and services. Recommendation: CMS should encourage states to adopt Medicaid
buy-ins that are constructed in such a manner to promote work among the majority
of individuals with disabilities in the state. Barrier: Transportation is often a disincentive for individuals with mental retardation and other disabilities in taking a job. All too often, public transportation is unavailable, not accessible for wheelchairs, unaffordable (taxis or private vehicles without subsidies), or not operational at times required for employment. Funding for transportation services under Medicaid’s home- and community-based waiver is not adequate to support individuals with disabilities who wish to work. Recommendation: CMS should require all states to include transportation
services for employment and vocational services in their home and community-based
waivers. Barrier: The regulations for the Ticket to Work and Self-Sufficiency Program, as proposed, will serve as a disincentive for individuals with disabilities—especially those with significant disabilities—as well as for private providers who wish to serve as Employment Networks. Recommendation: SSA should work to swiftly publish final rules
that will encourage eligible individuals to utilize the Ticket program to go
to work, while encouraging private providers to serve as Employment Networks
under the Ticket program. Barrier: Individuals with mental retardation and their families should be able to choose from an array of vocational and employment training options to assist in building the skills necessary to pursue their own desires and capabilities in reaching their own employment goals. Federal policies must not promote a "one-size-fits-all" approach for individuals with disabilities, remove any viable employment option, or artificially promote choice and self-direction. Recommendation: RSA should rescind the extended employment final
rule in its entirety. Eliminating extended employment as an outcome only serves
to reverse efforts of individuals to achieve economic self-sufficiency and independence
and exercise true choice, and to place them back into a role of dependency.
In redefining the definition of "employment outcome," the Rehabilitation
Services Administration (RSA) is restricting individual choice and undermining
the principle of self-direction. Workforce Investment Act Barrier: The programs under Workforce Investments Act and the One-Stop System in most states are not universally supportive of individuals with disabilities, especially individuals with the most significant disabilities. Recommendation: DOL should work with Congress to expedite the
confirmation of the Assistant Secretary for Disability Employment Policy and
should assist the Assistant Secretary in developing and implementing policies
and programs under the Workforce Investment Act to meet the needs of people
with disabilities. Barrier: Employment of people with disabilities is being compromised by the current workforce shortage facing private providers, including shortages of job coaches and direct support professionals. Recommendation: Federal policies should ensure that job coaches
and direct support professionals are paid a living wage, including appropriate
benefits. Barrier: Federal policies do not sufficiently allow access to and use of technology in the workplace. Recommendation: Federal policies should promote increasing the
utilization of assistive technology in all workplace settings. The Departments
of Education, Health and Human Services, and Labor should work together to assure
that funding mechanisms are in place so people with disabilities may access
assistive technology products. Barrier: While it is recognized that small business ownership and enterpreneurship are viable employment options for individuals with disabilities, Federal policies and practices can serve as barriers for individuals who want to be self-employed. Recommendation: The Small Business Administration should include
individuals with disabilities as a covered group under the SBA 8a program and
ensure that all SBA programs that promote small business development contain
a component for people with disabilities. Social Security/Income Maintenance
Recommendation: The Administration should propose in its
FY 2003 budget and the Congress should enact legislation that extends SSI to
qualified recipients in all U.S. territories.
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