Initiative ~ Executive Order ~ HHS Role ~ News & Additional Resources

Delivering on the Promise
Table of Contents

U.S. Department of Health and Human Services
[Complete Report: HTML = 315K / PDF = 426K]
Table of Contents ~ Chapter I ~ Chapter II ~ Chapter III
Appendix A ~ Appendix B ~ Appendix C ~ Timeline

Self-Evaluation to Promote
Community Living for People with Disabilities

Report to the President
on Executive Order 13217

Chapter III: Delivering on the Promise:
Actions to Address the Barriers

1. Coherent, Cost-Effective Structure, Administration and Financing
   1. Medicaid: Eliminate Institutional Bias
      1. Immediate HCBS Reform Action
      2. Medicaid Community Services Reform Task Force
      3. Services for Persons with Mental Illness
      4. Administrative Efficiencies
      5. National Technical Assistance Strategy
      6. HCBS State Plan Option
      7. Removing Eligibility Uncertainty and Delays to Transition Qualified Persons from Institutions
      8. Services for Children in Residential Treatment
   2. Medicare: Eliminate or Reduce Institutional Bias
      1. Discharge Planning
      2. Durable Medical Equipment in Medicare
   3. Improving the Workforce Availability and Capability
      1. Direct Service Worker National Demonstration
      2. Collaboration for Direct Service Workers
   4. Productive Employment
      1. Medicaid Buy-In Improvements
2. Promoting Independence, Responsibility, and Consumer-Driven Services
   1. Person-Centered Planning
   2. Self-Directed Services Waiver
   3. Health and Disability Education and Mentoring
3. Assistance to Families and Informal Caregivers
   1. Model Waiver and Demonstration for Family and Caregiver Support
   2. 1. Medicaid Respite Service for Adults
      2. Demonstration: Respite Service for Caregivers of Children Who Have a Substantial Disability
   3. Action Plan for Children and Youth with Special Health Care Needs and Their Families
4. Coordination and Reduction of Fragmentation
   1. Coordination within HHS
      1. Establish an HHS Office on Disability and Community Integration
      2. HHS Disability Advisory Committee
   2. Coordination Among Federal Agencies
      1. Formalize Permanent Interagency Council on Community Living
5. Accountability and Fulfillment of Legal Obligations
   1. Complaint Resolution and Voluntary Compliance
      1. Alternative Dispute Resolution
      2. Regulatory Revisions To Facilitate Access To Records
   2. Specialized Technical Assistance and Related Activities
      1. Broad Dissemination of Information About Voluntary Compliance
      2. Clarification of Medicaid Policies Affecting Individuals with Psychiatric and Co-Occurring Disorders
      3. Increased Regional Efforts to Provide Technical Assistance to States and Promote Olmstead Compliance
      4. Technical Assistance on Services for Older Persons
   3. Effective Quality Assurance and Quality Improvement
      1. Develop a Multi-Pronged Strategy to Address Quality of Care Issues in HCBS
      2. Quality Improvement
      3. Action Reinvestment for Quality
   4. Specialized Technical Assistance and Related Activities
      1. Applied Knowledge
      2. Adequate Management Infrastructure
   5. Other Actions That Promote Accountability and Capability
      1. Systems Change Grants
      2. Disability Policy Fellows Program

Many of the ideas contributed through the public input process had obvious merit, but require additional input, study, or time for essential parties to reach agreement on the most advisable course of action. For this reason, a limited number of workgroups have been proposed to keep these ideas alive and promote their further development.

Because a number of the solutions involve cross-cutting activities among federal agencies, we have included certain solutions designed to address collaboration and coordination among federal programs. The most significant such proposed action is the creation of the Interagency Council on Community Living as a continuing, coordinating body.

Finally, HHS strongly supports the President's announced plan to establish a National Commission on Mental Health. HHS actively encourages the Commission's further consideration of the issues and solutions raised in the public input process as related to individuals with mental illness and/or substance abuse disorders, including consideration of:

• The availability and delivery of new treatments and technologies for individuals with severe mental illness and co-occurring mental and substance abuse disorders.

• Further consideration of methods by which services for children with serious emotional disturbances and adults with mental illness and co-occurring disorders may be improved.

• Flexibility of Mental Health and Substance Abuse Block Grant services.

• Development of improved community-based services and equal treatment for persons with mental illness and/or substance abuse disorders.

In consultation with states and people who have a disability or long-term illness, the Centers for Medicare & Medicaid Services (CMS) will propose a coordinated package of regulatory or potential legislative improvements that would quickly reduce some of the barriers to community living and reduce institutional biases in the Medicaid program, which may include:

1. Improving waiver stability: Remove the requirement for states to seek renewal of a 1915(c) waiver unless CMS provides the state with 6 to 12 months advance notice that renewal will be required due to identified and unresolved performance problems. Cost-effectiveness formula requirements would be retained and states would continue to provide cost-effectiveness projections. Improvements to state annual performance reporting would also be included.

2. Transitions from institutions: Clarify that temporary services designed to transition individuals to a community residence are feasible in Medicaid's home and community-based services waivers, excluding room and board, but including the one-time cost of security deposits, initial furnishings, utility/telephone set-up fees and deposits, and similar one-time initial expenses within clear limits and transition criteria established by the state.

3. Level of care criteria: Clarify that the need for "active treatment" is distinct from level of care and not required in order for an individual with MR/DD to qualify for services under an HCBS waiver.

4. Focus institutional services criteria: Allow states that have tightened or would tighten institutional eligibility for hospitals or Intermediate Care Facilities for the Mentally Retarded (ICFs-MR) to do so, without simultaneously narrowing HCBS waiver eligibility, by permitting (but not requiring) the state HCBS program to include levels of care that have been in effect in the state plan on or after passage of 1915(c) of the Social Security Act.

5. Targeting income/asset disregards: Allow states to restrict the disregard of income or resources under 1902(r)(2) to HCBS waiver eligibles, rather than apply the 1902(r)(2) income/resource disregards to an entire, current Medicaid eligibility group (such as all medically needy individuals).

6. Transitions from IMDs or Correctional Facilities: CMS will clarify methods by which states may ensure continuity of health coverage as Medicaid-eligible individuals transition from institutions within which federal financial participation for services is precluded under 1905(a)(A) and (B) of the Social Security Act (i.e., IMDs or correctional facilities) to the community, and methods by which states may address their responsibilities for eligibility determination or maintenance while eligible persons reside in such institutions.

BARRIERS ADDRESSED BY SOLUTION

The above actions may be taken without major restructuring. Each action removes or reduces an impediment that currently limits the ability of states to offer effective, timely community alternatives to institutions, as described below.

Improving waiver stability: HCBS waivers must now be renewed every three to five years. The waivers, however, have become an essential part of state long-term care systems. For example, the waivers have helped reduce the ICF/MRs population to the point that there are more people with developmental disabilities served in HCBS waivers than in institutions. Requiring frequent waiver renewals adds administrative expense for states, creates uncertainty about the reliability of community services in the minds of consumers and families, and conveys a bias toward institutional services (that require no federal renewal) compared to community services.

Transitions from institutions: Individuals seeking a return to the community from institutions are faced with many one-time expenses, such as those needed to secure an apartment, ensure telephone and electricity service, etc. This action would remove uncertainty on the part of many states and make it clear that payment of room and board is not permissible, but such one time set-up expenses may be included in HCBS waivers for individuals who make the transition from an institution.

Level of care criteria: HCBS waivers may only serve individuals who require the level of care typically provided in a Medicaid-funded institution. Active treatment is a service that ICF/MRs are required to provide. This action would clarify that the need for active treatment is not required for HCBS waiver eligibility and that the requirement for a facility to provide active treatment is distinct from an individual's need for a particular level of care.

Focus institutional services criteria: States that wish to tighten institutional level of care requirements are often prevented from doing so because to do so also narrows the eligibility for HCBS waivers. In addition, States that have tightened institutional level of care are faced with the prospect of restoring, or have restored, lower levels of institutional care due to this problem. The statutory improvement proposed here would allow states to tighten eligibility for hospital and ICF/MR admissions (but not nursing homes) by simply permitting states to set HCBS waiver eligibility at any hospital or ICF/MR level of care covered by Medicaid since the federal HCBS waiver law was enacted in 1981.

Targeting income/asset disregards: Many individuals cannot leave institutions because the amount of income they are permitted to retain in the community and still obtain vital Medicaid services is insufficient to pay basic room and board. In contrast, Medicaid pays for all room and board in nursing facilities, hospitals, or ICF/MRs. Section 1902(r)(2) of the Social Security Act currently permits states to address this problem in a very broad manner by allowing states to disregard state-specified income or resources (assets) in determining Medicaid eligibility. However, states must currently apply 1902(r)(2) to entire eligibility groups, such as all persons with a disability who are medically needy. This option would permit states to narrow their application of income or resource disregards under 1902(r)(2) to people who meet institutional level of care, rather than apply it to an entire Medicaid eligibility group. This option provides states with more flexibility, allows them to adopt an incremental approach to improving their state systems, and prevents states from needing to do more than they may wish to do within the constraints of tight budgets.

Transitions from IMDs and Correctional Facilities: While individuals retain their Medicaid eligibility during a stay in an Institution for Mental Disease (IMD) or correctional facility, states often let such eligibility lapse if the institutional stay exceeds six months. The reason for this is that federal matching funds are not available for services to individuals during their residence in such institutions. Such lapses in eligibility create significant continuity of care problems when the individuals leave the institution for the community. This is particularly true for persons with a mental illness or HIV-AIDS who require a daily regimen of medically-monitored drugs that are critical to their health and daily functioning. States are unclear both about their responsibilities under the law and the current options for ensuring continuity of care. CMS will issue clarifying guidance.

SOLUTION I.A.2: MEDICAID COMMUNITY SERVICES REFORM TASK FORCE

CMS will establish a time-limited Medicaid Community Services Reform Task Force to advise the Department on the implementation of solutions described in this report and advise CMS on other actions that may be advisable to remove barriers and promote community living on the part of people with a disability. The Task Force will include representatives of all age and target groups within the disability community as well as representatives from key national, state and local organizations and government associations. Among its responsibilities the Task Force will consider issues related to:

• Options for improvement of home health, personal assistance services, personal emergency response systems, and other state plan services critical to health and community living;

• Supporting family members as critical caregivers and evaluating and identifying areas or conditions in which payment to family caregivers for supportive services to spouses and minor children may be prudent and cost-effective;

• Improving methods for coordinating the legitimate roles played by the single state Medicaid agency, other state-level agencies responsible for services to particular target groups, and the use of local, public administering agencies for Medicaid and related long-term support services, including agencies serving as one-stop shopping entry points into the system;

• Improving methods of alternative contracting for services employing methods that promote best-value and optimum consumer direction;

• Improving methods to make use of advances in service delivery that increase user self-direction, independence, and maintenance or development of personal supports, including person-centered planning, peer mentoring, support coordination, individualized budgeting or service direction, and agents that support an individual in managing finances and meeting legal requirements;

• Other needed reforms to promote productive employment and community participation; and

• Coordinating Medicaid and other federal programs to achieve optimum efficiency to such an extent that people with a disability will experience a community system that is as seamless, understandable, and as coherent as possible.

BARRIER ADDRESSED BY SOLUTION

Since institutional bias is embedded in the structure of the Medicaid program itself and will require legislative reform, care must be taken to fully develop options and weigh alternatives. The appointment of a Task Force with broad representation of stakeholders, including consumers, will ensure the development of practical, cost-effective solutions with high potential for enactment.

SOLUTION I.A.3: SERVICES FOR PERSONS WITH MENTAL ILLNESS

HHS will develop and implement strategies to improve access to HCBS waiver and non-waiver services for adults and children with mental illness or emotional disturbances, or co-occurring mental illness and substance abuse or other disorders. Specifically, CMS will issue technical assistance and guidance to improve state understanding of existing options under Medicaid waivers (including section 1115 and Section 1915(c) waivers) for providing community-based services to children with an emotional disturbance and adults with a mental illness or co-occurring mental illness and substance abuse or other disorders, as an alternative to a general hospital or nursing facility.

BARRIER ADDRESSED BY SOLUTION

Under Medicaid Home and Community-Based Waivers, states can provide home and community-based care to individuals as an alternative to institutional placement, but the state must demonstrate that the program will be cost effective. Since federal financial participation is not permitted under the Medicaid program for services to an individual who resides in an Institution for Mental Disease (IMD), CMS will issue technical assistance and guidance to improve state understanding of existing options under existing HCBS waivers.

SOLUTION I.A.4: ADMINISTRATIVE EFFICIENCIES

CMS will act to increase the cost-effectiveness of home and community-based services by reducing certain administrative burdens, increasing reliance on electronic communications, and streamlining waivers, including:

1. Promoting appropriate delegation and flexibility: CMS will work with states to advance methods under Medicaid by which appropriate delegation of tasks and flexibility (e.g., nurse delegation) may reduce public costs or increase consumer control and satisfaction at no greater cost;

2. Unnecessary level of care re-determinations: Adjust regulation or propose other changes to permit states to waive the annual re-determinations of level of care for HCBS waiver eligibility for those categories of disability or illness determined by CMS to be statistically documented as stable; and

3. Integrating target group services: Permit states to target a single waiver to more than one major target group (e.g., aged and developmentally disabled) or, alternatively, to use functional criteria to define the eligible population to be served, provided there is a single service package and the total cost-effectiveness calculation is derived from the sum of discrete calculations in which costs are identified separately for each relevant institutional category (e.g., NF, ICF-MR, or hospital).

BARRIER ADDRESSED BY SOLUTIONS

These solutions promote cost-effective administration of HCBS waivers and related services by increasing efficiency.

1. Promoting appropriate delegation: Delegation of tasks by nurses to trained home health aides or family members, physician delegation to advanced practice nurses, and similar appropriate delegation of tasks may reduce public costs, or increase consumer control and satisfaction at no greater cost. CMS will work with states to advance methods by which such appropriate delegation may best be accomplished.

2. Unnecessary level of care redeterminations: States are currently required to reassess level of care for HCBS waiver eligibility on an annual basis. But many conditions do not change (e.g., an I.Q.). Requiring states to reassess such conditions each year simply adds wasteful administrative costs.

3. Integrating target group waivers: Current CMS regulations require states to submit, administer, and report separately for waivers that serve different target groups. In particular, waivers serving elderly, people with a developmental disability, or people with a mental illness must all be administered separately. This adds unnecessary administrative expense. In addition, the decision to administer one or separate waivers for different target groups should be a state, rather than federal, decision.

SOLUTION I.A.5: NATIONAL TECHNICAL ASSISTANCE STRATEGY

CMS will ensure the provision of a coherent national program of technical assistance to all states to promote the most effective use of existing Medicaid authority in pursuit of enhanced opportunities for community living and community participation, including productive employment. This will include:

• Promoting the most effective use of existing Medicaid authority in pursuit of enhanced opportunities for community living and community participation;

• Developing a "Promising Practices" web site for community services;

• Ensuring effective administration of the System Change for Community Living grants in 2001 to assure optimum results, seeking assistance for states that did not receive grant awards in 2001; and

• Seeking methods by which additional assistance may be provided to states and local organizations dedicated to improving community-based services.

BARRIER ADDRESSED BY SOLUTION

This initiative will be designed to fulfill HHS' obligation under the President's Executive Order to provide technical guidance and assistance. CMS also recognizes the need to increase technical assistance to states to help them negotiate complex Medicaid rules and procedures.

SOLUTION I.A.6: HCBS STATE PLAN OPTION

CMS will work with states and other stakeholders to consider statutory changes to establish a state plan option for comprehensive HCBS services.

BARRIER ADDRESSED BY SOLUTION

Home and community-based services remain a "waiver" service under Medicaid, while institutional services are part of the standard state plan. This action would examine the potential to level the playing field by allowing states to adopt a comprehensive HCBS option as part of the state plan. Implementation options will also be explored. For example states might have up to 5 years as a "ramp-up period" to achieve statewideness and meet other requirements for state plan services.

SOLUTION I.A.7: REMOVING ELIGIBILITY UNCERTAINTY AND DELAYS TO TRANSITION QUALIFIED PERSONS FROM INSTITUTIONS

CMS will examine the costs and benefits of statutory change to establish a state option enabling presumptive Medicaid eligibility for people determined to need nursing facility or ICF-MR level of care who are being discharged from hospitals or other institutions to the community, similar to the presumptive eligibility for pregnant women but retaining the asset test. Hospitals now represent the single most frequent source of nursing facility admissions. This option would be designed to make it more feasible to discharge a hospitalized person to the community rather than to a nursing facility or similar institution, or to ensure that the institutional placement is one of short duration.

BARRIER ADDRESSED BY SOLUTION

Aged or disabled individuals who require long-term care after their hospital stay are often faced with two main choices: either nursing home care or community services via a home and community-based services (HCBS) waiver. Nursing homes offer natural advantages to hospital discharge planning staff -- they can offer on short notice a pre-packaged array of services, including room and board, and nursing home staff are skilled at expediting Medicaid applications. The relative speed with which a Medicaid application can be filed when a nursing home is involved often translates into a "default" decision to place the individual in a nursing home rather than returning home or attempting a community arrangement through HCBS waiver services.

Waiting one to three months for a Medicaid eligibility decision introduces an element of uncertainty that makes community services appear risky to the individual or family. Such uncertainty leads to higher rates of institutional placement then necessary.

SOLUTION I.A.8: SERVICES FOR CHILDREN IN RESIDENTIAL TREATMENT

CMS will propose statutory improvements to create an evaluated, 10-year HCBS demonstration as an alternative to Medicaid-funded psychiatric residential treatment centers. The demonstration would be limited by the total national number of enrollees and would allow states to set up home and community-based alternatives for children who would typically be served in psychiatric residential treatment facilities. States would be required to:

1. Provide state match at the same rate as Medicaid, use HCBS waiver criteria for financial eligibility, provide a service package equivalent to those required in Medicaid HCBS waivers, and closely coordinate such demonstration services with services available under the state Medicaid plan;

2. Ensure an adequate array of state plan services responsive to the support requirements of children with emotional disturbance; and

3. Maintain fiscal effort for services to children with emotional disturbances.

BARRIER ADDRESSED BY SOLUTIONS

Medicaid provides inpatient psychiatric hospital services for children under age 21. The statute also extends these Medicaid benefits to children in psychiatric residential treatment facilities. CMS does not, however, consider residential treatment facilities to meet the definition of hospitals, therefore, they have not qualified as institutions against which states may measure HCBS waiver costs. It is believed that extending HCBS waivers as an alternative to residential treatment facilities would allow children to receive treatment in their own homes, surrounded by their families, at a cost per child which would be less than the cost of institutional care. The proposed demonstration, while limiting federal financial exposure by capping the total demonstration participation, will allow CMS to develop reliable cost and utilization data that would explain what we might expect if the HCBS waiver were permitted as an alternative to psychiatric residential treatment centers.

CMS will review current Medicare and Medicaid discharge planning policies to ensure that institutions participating in Medicare and Medicaid provide more effective discharge planning for adequate and appropriate community-based care.

BARRIER ADDRESSED BY SOLUTION

One reason for the inappropriate institutionalization of people with disabilities is ineffective discharge planning. CMS will review and strengthen its discharge planning policies in order to ensure that individuals with disabilities receive appropriate placement and community-based services.

SOLUTION I.B.2: DURABLE MEDICAL EQUIPMENT IN MEDICARE

CMS will examine methods to improve access to durable medical equipment (DME), including revisiting the operative definition of DME in light of the Ticket to Work statute to determine if it should include additional technologies to promote independence and community living. Other improvements may include:

1. Allow durable medical equipment, prosthetics, orthotics and supplies (DMEPOS) to be furnished in a skilled nursing facility (SNF) for one month prior to discharge in order to allow the beneficiary to become acclimated to the equipment, make any necessary equipment modifications, and to allow for necessary teaching or training

2. Requiring a trial rental period for expensive medical equipment but generally purchased.

BARRIER ADDRESSED BY THIS SOLUTION

Under current program rules in both the Medicaid and Medicare programs, access to durable medical equipment (DME) and other assistive devices that promote independence and productivity is generally viewed as restrictive.

Item "a" would address the fact that transition to the community on the part of residents of nursing facilities can be overwhelming, particularly if this transition involves adjustment to a new or upgraded prosthetic or orthotic device. Current CMS policy allows for pre-discharge delivery of DME, prosthetic or orthotic devices, if specific conditions are met, two days before discharge. This is insufficient time to allow for equipment modifications and teaching. Item "b" increases cost-effectiveness of Medicare purchases by permitting a rental period before a purchase is made. Currently, Medicare pays for purchase of expensive DME even when the equipment furnished may prove to be medically inappropriate for a particular patient, or the individual determines that the equipment may be less useful than anticipated. Such was the case with transcutaneous electrical nerve stimulation (TENS) prior to 1989. In 1989, the law changed to allow for a trial rental period before Medicare would pay for TENS. This provision achieved a reduction in unnecessary expenditures and beneficiary co-payments.

HHS will initiate, together with a limited number of volunteer states, a national demonstration designed to address workforce shortages of community service direct care workers. The demonstration will test the extent to which workforce shortages and instabilities might be addressed through (a) better coordination with the Temporary Assistance for Needy Families (TANF) program and (b) the availability of vouchers for worker health insurance or for tuition or day care credits. Participating states would be expected to develop options for workers to purchase affordable group health coverage through the state health insurance system or similar organized insurance group.

BARRIERS ADDRESSED BY THIS SOLUTION

The absence of health insurance coverage for direct care workers in the community is one of the factors that limits the recruitment of workers, limits the ability of community programs to offer viable methods by which TANF recipients may reduce dependency of public programs, and limits the ability of people with disabilities to live in the community.

SOLUTION I.C.2: COLLABORATION FOR DIRECT SERVICE WORKERS

CMS and ASPE will collaborate on a joint initiative to (a) mobilize and make available to states a coherent body of information about methods to address worker shortage issues, (b) research significant issues, and (c) partner with foundations, other private sector organizations, the Department of Labor, and other agencies to formulate a comprehensive approach to the worker shortage issue.

BARRIER ADDRESSED BY THIS SOLUTION

The difficulty of recruiting and retaining direct service workers is a strong theme in public input about barriers to community living. Various states and many local organizations have developed innovative approaches to this problem, but the information is not readily accessible. This initiative will mobilize such information, make it accessible, and enlist private sector partners in fashioning a long-term partnership strategy.

HHS will seek improvements to federal legislation that would permit states to:

• Establish a minimum threshold for work, up to 40 hours per month, in order for individuals to be eligible for participation in the state Medicaid buy-in programs, provided there are appropriate worker safeguards for building up to the minimum level of work effort during an individual's first six months of eligibility, and retaining eligibility for up to six months if employment is interrupted due to hospitalization, major illness, lay-off, or other misfortune;

• Remove the age limitation clause in the Ticket to Work legislation that eliminates Medicaid buy-in options when a worker with a disability is age 65 or older; and

• Use disability determination criteria in the Medicaid buy-in program that exclude employment status; In addition, CMS will seek changes to authorize the use of existing funds to provide technical assistance through direct contracts or grants with knowledgeable organizations skilled in working with states; adopt clarifications or proposals to enable states to reconcile conflicts between 1997 BBA provisions and 1999 Ticket to Work legislation; and seek an effective collaboration with SSA, DOE, DOL, HUD, SBA and others to coordinate federal initiatives and promote comprehensive solutions to the removal of employment barriers.

BARRIER ADDRESSED BY SOLUTION

The suggested legislative improvements described above would permit states to require a minimum level of work effort in order for a worker with a disability to purchase Medicaid health insurance under the Ticket to Work legislation. This reduces the potential for individuals to "game" the system, since there is not ability under current law for states to make such a requirement. Other potential improvements include removing the age discrimination currently in force in the Ticket to Work legislation that limits the "buy-in" option to those under age 65 and creates unnecessary unemployment when a covered worker attains the age of 65. Another improvement detailed above would permit states to remedy a technical problem in the legislation that reduces the effectiveness of the employment incentive. Other improvements would further promote employment for people with disabilities living in home and community-based settings.

CMS will update its regulations regarding Medicaid case management to emphasize person-centered approaches pioneered by states.

BARRIERS ADDRESSED BY SOLUTION

It has been more than a decade since CMS regulations were revised to reflect statutory changes enacted in the intervening time period and advances in person-centered planning. This action will incorporate both such advances.

SOLUTION II.B.1: SELF-DIRECTED SERVICES WAIVER

CMS will provide states a simplified model waiver on electronic media (for 1115 and other waivers) that offer both person-centered planning and self-directed service options. CMS will also develop technical assistance materials outlining existing options for states to develop flexible, cost-effective and consumer-driven methods of providing home health or personal assistance services.

BARRIER ADDRESSED BY SOLUTION

The need for additional and self-directed services emerged as a major theme from the National Listening Session and from other public input. This solution will help self-directed services to succeed by providing states and providers with the information and tools to offer self-directed care, thereby increasing the likelihood that self-directed care will be made available for individuals with disabilities and their families. By providing states with a simplified model waiver template, CMS will:

• Promote flexibility for states that are seeking to increase the opportunities afforded consumers in deciding what types of services to receive, and from whom to receive them;

• Provide states with more streamlined applications for waiver programs thus reducing the administrative burden for preparing proposal submission; and

• Facilitate states' initiatives for Olmstead compliance.

SOLUTION II.C.1: HEALTH AND DISABILITY EDUCATION AND MENTORING

The Centers for Disease Control and Prevention, in collaboration with the Department of Education and others, will continue its educational and self-help curriculum, pioneered with the nation's Independent Living Centers, entitled "Living Well with a Disability." The initiative enables individuals with disabilities to benefit from increased knowledge regarding ways to take charge of one's health and daily living challenges.

BARRIERS TO BE ADDRESSED

Insufficient knowledge or expertise about methods of taking charge of one's health and well-being leads to higher reliance on professionals and higher incidence or exacerbation of illness and disability. "Living Well With a Disability" is an 8-week curriculum that has been developed to address these barriers. The program has been pre-tested in community settings in nine Independent Living Centers throughout the country. Initial data from cost-effectiveness research conducted by the University of Montana and the University of Kansas indicate a net benefit to Medicare, Medicaid, and private insurance carriers. The CDC's Office on Disability and Health will be responsible for the program and will collaborate with CMS, the Department of Education, and others to ensure the most effective application of these methods that will augment the ability of people with a disability to affect their health outcomes.

CMS will develop a model simplified, streamlined, electronic waiver application form (including 1915(c) and 1115 waiver options) designed to permit states to offer a flexible array of supports for caregivers and the individuals for whom they provide assistance.

In connection with this waiver, ADD, AoA and SAMHSA will explore coordinating grant funds, and CMS will coordinate Medicaid state plan service options and Medicaid waivers within the structure of a coherent demonstration. The initiative will be designed to:

1. Keep families intact, thereby reducing the demand for out-of-home placement;
2. Provide families flexibility in determining and selecting what services and supports the family needs to retain the individual in the family's or the individual's own residence (recognizing the distinctions between what they want and need) in exchange for the agreement to work within an individually determined budget; and
3. Provide states with a template to serve as a guide to expand family support options.

BARRIER ADDRESSED BY SOLUTION

Families, friends, and community support networks provide the great majority of long- term care in the United States. To the extent such family and community caring can be promoted and supported, public costs can be reduced.

In addition, a family support model waiver program would strengthen supports to families and, possibly, permit the person to live with the family longer. States and families that have the ability to choose items in the state's waiver program and flexibility to "customize" services generally find higher levels of consumer and family satisfaction.

SOLUTION III.B.1: MEDICAID RESPITE SERVICE FOR ADULTS

HHS will seek authorization and funding from Congress to conduct a ten year national demonstration that would allow states to provide respite care (temporary care that offers support to family caregivers) for adults as a fixed budget demonstration. The state option would provide essential relief to unpaid caregivers (including, for example, persons providing continuous care and supervision to an individual with Alzheimer's or mental illness) within specified federal limits. States could establish more restrictive limits, utilization controls. States would be required to provide state match at a ratio equivalent to the ratio in Medicaid. States would be required to maintain fiscal effort for caregiver support.

BARRIER ADDRESSED BY SOLUTION

Respite care -- temporary care that offers support to family caregivers -- is the service most often requested by families in an effort to keep their family member with a disability at home. Caring for a family member with a disability is highly stressful. Unrelieved caregiver burden is a major contributing factor to caregiver illness, marital discord and divorce, and institutionalization of individuals with a disability. Many family members report that they are unable to leave their family member with a disability with another relative or sitter, that some day care centers will not accept people with disabilities, and that it is not safe for the individual with the disability to be left at home alone. Occasional periods of respite care can significantly reduce stress in the family and enhance the ability to keep the family member at home and in the community.

Respite care can take many forms. Care may be provided in the family home, allowing the care-taking family member to get away for a few hours, or in the respite provider's home. It can also be provided in day programs and senior centers. In some cases, group homes or other facilities may provide overnight or weekend care.

Medicaid requirements currently limit respite care to home and community-based waiver programs. Such programs are limited to people who already require institutional level of care, often have long wait lists, and are best suited for individuals who require a full package of services rather than a targeted service such as respite. To the extent a Medicaid respite service extends the capacity of families to keep their loved ones at home and delay or prevent the use of more expensive forms of care, the service could result in some offsetting cost savings for Medicaid and Medicare.

SOLUTION III.B.2: DEMONSTRATION: RESPITE SERVICE FOR CAREGIVERS OF CHILDREN WHO HAVE A SUBSTANTIAL DISABILITY

CMS will seek authorization and funding from Congress to implement an evaluated, 10-year demonstration to provide essential relief to caregivers of children who have a substantial disability. The demonstration would be limited by the total national number of enrollees and would allow states to establish flexible respite services for such caregivers, tailored to the needs of individual families. The demonstration would also include an evaluation of the possible effects of including supervision under personal assistance services. In this flexible "Medicaid-like" demonstration states would be required to:

1. Provide state match at the same rate as Medicaid, use HCBS waiver criteria for financial eligibility, provide a service package equivalent to those required in Medicaid HCBS waivers, and closely coordinate such demonstration services with services available under the state Medicaid plan;
2. Ensure an adequate array of state plan services responsive to the support requirements of children with emotional disturbance; and
3. Maintain fiscal effort for services to children with emotional disturbances.

BARRIER ADDRESSED BY SOLUTION

Caregivers of children with a disability face the same barriers and challenges as those faced by caregivers of adults, described previously. However, special issues pertain to the question of developing a national program under Medicaid for support of caregivers of children. One concern is that under Medicaid's Early, Periodic Screening Detection and Treatment Program (EPSDT) an optional Medicaid service, by law, is mandatory upon states with regard to children determined to require such services. It is not the intention of this HHS initiative to create mandates for states that might require substantial state matching funds. A demonstration program will permit CMS and states to obtain more specific cost and utilization data, evaluate the effects of improved caregiver support on the well-being of families and on possible savings in other programs (such as reduced out-of- home placements).

SOLUTION III.C: ACTION PLAN FOR CHILDREN AND YOUTH WITH SPECIAL HEALTH CARE NEEDS AND THEIR FAMILIES

HRSA's Maternal and Child Health Bureau will take the lead in developing and implementing a plan to achieve appropriate community-based services systems for children and youth with special health care needs and their families. Components of the plan may include:

1. Development of community-based systems of services that are inclusive of children with special health care needs (CSHCN) and their families, where substantial decision-making authority is devolved from the federal government to the states to the communities.
2. Recognition that families are the ultimate decision-makers for their children and encouragement of participation in making informed decisions.
3. Development of standardized elements of the medical home for CSHCNs. In addition, the agency will develop and disseminate models of the medical home, and provide additional training resources to primary care professionals to develop medical homes.
4. Review of the variety of reimbursement mechanisms that impact children with special health care needs.
5. Through the Maternal and Child Health Block grant (Title V of the Social Security Act), and the Newborn Genetics Program (Title XXVI of the Child Health Act), expansion and strengthening of newborn screening systems and promote ongoing screening of CSHCN (incorporating EPSDT into the medical home concept).
6. Ensuring that youth with special health care needs receive the services necessary to transition to all aspects of adulthood, including from pediatric to adult health care, from school to employment and to independence.

BARRIER ADDRESSED BY SOLUTION

For children with special health care needs, specific barriers include access to: (1) comprehensive, family-centered care; (2) affordable insurance; (3) early and continuous screening for special health care needs, and (4) transition services to adulthood. With respect to families of such children, issues relate to family satisfaction and the complexity and organization of services resulting from fragmentation and multiple funding streams. Developing a plan to address these barriers is a necessary first step to improving access to community-based services for children with special health care needs.

HHS will establish an Office on Disability and Community Integration. The Office on Disability and Community Integration will oversee the coordinated development and implementation of policies, programs and special initiatives within HHS that impact people with disabilities regardless of age or type of disability. The Office on Disability and Community Integration will serve as the focal point within the Department for disability issues including the coordination of disability science, policy, programs and special initiatives within the Department and with other federal agencies. The Office will also carry out functions related to interagency coordination, including: ensuring that HHS is an effective participant in the Interagency Council on Community Living (described below at IV.B.1); and mobilizing and supporting HHS components in devising and carrying out specific interagency efforts.

BARRIER ADDRESSED BY SOLUTION

Both the HHS self-evaluation and public input processes identified fragmentation and lack of coordination within HHS as a significant barrier to community living for individuals with disabilities. The public input process and HHS self-evaluation made clear the need to oversee the coordinated development and implementation of policies, programs and special initiatives within the Department that impact people with disabilities regardless of age or type of disability. The Office on Disability and Community Integration would fulfill this function. The creation of such an entity is strongly supported by HHS components and stakeholders.

SOLUTION IV.A.2: HHS DISABILITY ADVISORY COMMITTEE

HHS will establish a Disability Advisory Committee that includes representation by all of the constituencies described in Executive Order 13217, including individuals with disabilities, family members of individuals with disabilities, advocacy organizations, providers and state and local government representatives. The Disability Advisory Committee will review and advise HHS on the implementation of solutions set out in this report, and will provide information and advice to the HHS Office on Disability and Community Integration on community integration issues. The Disability Advisory Committee will be established consistent with the requirements of the Federal Advisory Commission Act (FACA) and will include representation from the National Council on Disability.

BARRIER ADDRESSED BY SOLUTION:

Through the public input process mandated by the Executive Order, people with disabilities, family members, providers, state and local government entities and national organizations came forward to provide federal agencies with valuable insights and information about barriers to community-based services and solutions to these problems. The federal government's interaction with these stakeholders underscored the importance of listening to the people who are closest to problems and using their real-life expertise to guide us toward effective solutions. These individuals and organizations also expressed an interest in future opportunities to be involved in the development and implementation of government efforts to improve the availability of community-based service. The continued involvement of these stakeholders after the submission to the President of this report will be critical to the success of government efforts to facilitate community integration and is consistent with the expressed interests of the Administration and the leadership of HHS.

HHS proposes that the President formalize permanently the Interagency Council on Community Living (ICCL), convened by HHS Secretary Thompson in July 2001 to accomplish the tasks set out in Executive Order 13217. The ICCL would be comprised of all agencies involved in implementation of the Executive Order, with the addition of other agencies as appropriate, including the Internal Revenue Service and the Equal Employment Opportunity Commission (EEOC). Designated members would be Secretaries, agency heads, or their functional equivalents. In addition, staff would be assigned to conduct the ongoing interagency work. HHS proposes that the Council articulate a strategic interagency plan to expand and promote home and community-based services, and to address, at a minimum, issues related to: housing; workers with disabilities; transportation; the long-term care workforce; assistive technology; and education.

The Council will formulate short and longer range action steps. All efforts will be made to develop a small number of interagency demonstration programs, through consolidation of current programs. The Council will ensure that the specific population needs of Tribal communities and children are addressed, and that cultural, ethnic, and life span issues are addressed.

BARRIERS ADDRESSED BY SOLUTION

Government programs that serve individuals with disabilities, including those programs that are designed to or can facilitate community integration, are administered by several different federal agencies. These programs sometimes fail to meet the needs of individuals with disabilities as effectively as possible due to inadequate programmatic coordination and communication across agencies. Throughout the public comment process, individuals and organizations frequently identified fragmentation and lack of communication as a primary barrier to community integration for individuals with disabilities. Agencies identified this barrier as well. The President's Executive Order provided federal agencies with the impetus to work together to identify barriers to community living and to evaluate agency programs, policies, statutes and regulations. It is apparent from this process that continued interagency coordination is essential to fulfill the goals of the Executive Order and to effectively implement the solutions identified by federal agencies.

OCR and the Department of Justice (DOJ) will develop a pilot program to use DOJ's alternative dispute resolution (ADR) program for the resolution of appropriate complaints filed with OCR alleging that individuals with disabilities are not being provided services in the "most integrated setting appropriate to their needs," under ADA Title II regulations as interpreted in the Olmstead decision.

BARRIER ADDRESSED BY SOLUTION

Executive Order 13217 requires HHS, along with the Department of Justice, to "fully enforce" Title II of the ADA, and specifically directs that alternative dispute resolution process be used whenever possible to resolve complaints alleging unjustified institutionalization. This solution provides for OCR-DOJ collaboration in developing an ADR pilot program.

OCR has been working with states to facilitate planning for the community integration of individuals with disabilities, in some cases reviewing state Olmstead plans to determine whether plans are sufficient to resolve the issues raised in "most integrated setting" complaints filed against states. OCR has successfully resolved directly with the state or local jurisdictions a number of these individual complaints. However, there are some situations where a neutral third party may facilitate resolution. These complaints may be especially amenable to resolution via ADR.

Since 1994, DOJ has maintained an ADR program in which professional mediators who have been trained about ADA legal requirements help adverse parties devise mutually acceptable solutions in appropriate cases involving alleged violation of the ADA. Using this established ADR program, OCR and DOJ will develop a pilot designed to offer ADR on a trial basis to a limited number of complainants.

SOLUTION V.A.2: REGULATORY REVISIONS TO FACILITATE ACCESS TO RECORDS

HHS will recommend that ADA Title II enforcement regulations be amended to clarify that the standards for obtaining access to records during investigation under ADA Title II are consistent with those under Section 504.

BARRIER ADDRESSED BY SOLUTION

Under regulations setting out OCR's enforcement authority under Section 504 of the Rehabilitation Act of 1973 (prohibiting disability-based discrimination by recipients of federal funding), OCR has access to documents that may be pertinent to determine compliance. The statutory language of Title II of the ADA establishes that the "remedies, procedures and rights" of Section 504 apply in allegations of discrimination under Title II. But, the regulations regarding Title II of the ADA do not contain the same specific document access provisions as the Section 504 regulations. Amending the Title II regulations would ensure that these regulations are consistent with Title II's statutory language, and clarify that OCR has access to needed documents when conducting an investigation concerning compliance with the most integrated setting requirement where the target of the investigation is a state or local government entity that does not receive HHS funding. This solution will be evaluated and implemented in consultation with DOJ.

HHS will expand its dissemination to states, Tribes, and other stakeholders of information about: voluntary compliance with the ADA's most integrated setting regulation and the Olmstead decision; promising practices in the provision of services in the most integrated setting to individuals with disabilities; specific examples of individuals with disabilities who have moved from institutional to community life; and other relevant developments.

BARRIER ADDRESSED BY SOLUTION

States and other public entities that want to comply with the law can benefit from access to information about promising practices. HHS components have access to some of this information, but need to do a better job in ensuring widespread dissemination. In addition, although some information may not currently be available to HHS components, this information could be gathered and made available through expanded technical assistance and enforcement efforts. The widespread dissemination of information about the means by which states have come into voluntary compliance with the ADA's most integrated setting requirement will increase the knowledge base of states, Tribes and other stakeholders nationwide, and can serve to spur the community integration of additional individuals with disabilities.

SOLUTION V.B.2: CLARIFICATION OF MEDICAID POLICIES AFFECTING INDIVIDUALS WITH PSYCHIATRIC AND CO-OCCURRING DISORDERS

CMS will clarify existing Medicaid policies identified as confusing or prone to misunderstanding that relate to community-based services for persons with psychiatric and substance abuse disabilities and children with serious emotional disturbances, and will provide necessary technical assistance on these policies to states to assist them to make full use of existing Medicaid programs. Technical assistance, with assistance from SAMHSA, will be provided to states in the following areas:

• The range of mental health-related services for which the rehabilitative option can be used, including specific examples from individual states, and the development of templates;
• The availability and limits of administrative services to ensure fulfillment of the statutory provisions for continued eligibility and discharge preparation for residents recognizing federal financial participation is not available for state plan services to the individual while an IMD resident;
• The eligibility guidelines for adults with psychiatric and substance abuse disabilities in nursing homes and psychiatric units of general hospitals for home and community-based waiver services; and
• The availability and application of demonstration grants under the Work Incentives Improvement Act of 1999 for employed persons with psychiatric and substance abuse disabilities.

BARRIER ADDRESSED BY SOLUTION

Inconsistencies across the states exist in the use of Medicaid programs for persons with psychiatric and substance abuse disabilities and children with serious emotional disturbances. Developing and providing technical assistance to the states will enhance states' ability to more consistently ensure access to community-based services and enhance community living for these persons.

SOLUTION V.B.3: INCREASED REGIONAL EFFORTS TO PROVIDE TECHNICAL ASSISTANCE TO STATES TO PROMOTE OLMSTEAD COMPLIANCE

HHS will create intradepartmental workgroups in each HHS region to work with states to promote compliance with the ADA and the Olmstead decision. These groups will bring together key federal components, including CMS, OCR, AoA, SAMHSA, HRSA, ACF, IHS and others to provide hands-on technical assistance across programs on how to provide expanded, better, more effective and appropriate community services for individuals with disabilities. The regional teams will work with states, particularly those developing the comprehensive, effectively working plans suggested by the Olmstead decision, to identify potential sources of funding and to implement best practices. In addition, these regional teams (or subgroups of these teams) will work with states on other cross-cutting areas related to community integration.

BARRIER ADDRESSED BY SOLUTION

Creating work groups that span across programs will enhance the ability of the federal government to provide states and Tribes with effective technical assistance on community services. Through increased communication and coordination among HHS components, these work groups will enhance states' ability to achieve Olmstead compliance.

SOLUTION V.B.4: TECHNICAL ASSISTANCE ON SERVICES FOR OLDER PERSONS

The Administration on Aging (AoA) will provide more technical assistance and guidance to states regarding the options available to them to creatively shape their services to best meet the needs of their elderly populations.

BARRIER ADDRESSED BY SOLUTION

The 2000 Amendments to the Older Americans Act allowed states to develop demonstrations, in limited areas of the state, to test innovative approaches to assist older individuals. Many state units on aging are unsure of how to use this new flexibility to demonstrate and implement new program design and coordination. Technical assistance activities by AoA will help advise state units on aging on ways in which using the waiver provision can facilitate the community integration of individuals with disabilities.

HHS will address quality of care issues in home and community-based services through a multi-pronged strategy developed in consultation with states and individuals with disabilities or long-term illnesses. This strategy will include:

• Establishing defined expectations for waiver and non-waiver home and community-based services, including that states establish their own quality improvement strategies for HCBS services;
• Assisting states in using the results of CMS quality reviews;
• Assisting states to design better systems of quality assurance and improvement that increase the state's response capability and prevent future problems;
• Providing technical assistance to states and CMS regions in effective systems design or quality improvement strategies;
• Analyzing and testing new approaches to ensuring and improving quality;
• Implementing new quality assurance and improvement systems uniquely suited for services in one's own home; and
• Ensuring that the specific population needs of Tribal communities and children are addressed and ensuring that cultural, ethnic and lifespan issues are addressed.

BARRIER ADDRESSED BY SOLUTION

Under current regulations, states must provide CMS with prospective assurances of quality in their waiver applications. Specifically, states must assure CMS that safeguards are in place to protect the health and welfare of HCBS waiver enrollees; that there is financial accountability for funds expended; that evaluation of enrollee need is valid and that enrollees are informed of and have a choice regarding whether they will receive care in a nursing facility or in the community.

However, expectations about specific state responsibilities are unclear and CMS does not have adequate tools to ensure fulfillment of these assurances or work effectively with states to make needed improvements. This initiative will provide resources to enable CMS to work collaboratively with states, national associations, and people who have a disability or long-term illness to clarify or develop important expectations about necessary elements in an effective QA/QI system. Events in multiple states over the past several years underscore the need to be vigilant about quality. A multi-pronged strategy is needed to ensure adequate standards and safeguards and to ensure that adequate actions are taken when problems are identified.

SOLUTION V.C.2: QUALITY IMPROVEMENT

Through an independent national contractor, CMS will (a) assess the current state of the art in community-based quality systems and (b) assist states in the following: using the results of CMS quality reviews; taking prompt remedial action for identified problems in HCBS programs; designing better systems of quality assurance and quality improvement that increase the state's response capability and prevent future problems; ensuring effective system design or quality improvement strategies; establishing quality standards and performance measures for all waiver and non-waiver home and community-based services; analyzing/testing new approaches to assuring and improving quality, and implementing new quality assurance and improvement systems uniquely suited for services in one's own home.

BARRIER ADDRESSED BY SOLUTION

The ultimate test of any quality system is whether the results are effectively used to (a) remedy specific identified problems and (b) improve the overall system to prevent future problems. These results are not sufficiently prevalent in the current system. This initiative will enable CMS to assess more closely existing systems and ensure the provision of direct assistance to state partners.

A national contractor will work with CMS, states, disability rights specialists, and other stakeholders to incorporate new and more effective quality assurance techniques in fulfillment of CMS responsibilities, including use of quality improvement practices pioneered in the private sector. The contractor will provide effective back-up to regional offices, provide the mobile capacity to move resources quickly where problems are most intense, be able to conduct more intensive reviews after the regional offices have identified initial problems, and work with CMS and the states to fashion more effective remedial strategies. Most importantly, the contractor will work with states and CMS to reduce the need to rely on after-the-fact inspection in favor of more preventative quality improvement approaches now widely used in the private sector.

SOLUTION V.C.3: ACTION REINVESTMENT FOR QUALITY

In consultation with states and people with a disability or long-term illness, CMS will develop improvements to HCBS waiver administration for legislative or regulatory consideration that will increase the prospect for prompt and effective remedy of identified problems. The improvements will reduce the need to rely on existing authority to terminate (or "non-renew") entire waivers if a state has failed to fulfill the statutory requirement for a system that will reasonably assure the health and welfare of HCBS waiver participants.

BARRIER ADDRESSED BY SOLUTION

CMS has responsibility for assuring that states operate Home and Community-Based Services (HCBS) waivers and managed care waivers in the best interests of the individual and in a manner that assures the health and welfare of the beneficiary. The Social Security Act requires that a state provide assurances to CMS that it will ensure the health and welfare of waiver participants. However, CMS is unable to ensure corrective action if a state fails to make adequate improvements following the identification of serious quality issues as the result of a CMS review.

If a state fails to fulfill its assurances regarding quality, the principal enforcement tools available to CMS are to refuse renewal or to terminate a waiver. These actions are generally stronger than required. They also impact negatively on large numbers of people who rely on the waivers for their ability to live in their own homes or in the community and whose quality of service may be excellent. For such HCBS waiver participants, CMS termination of an entire waiver may mean (a) the termination of services (because comparable services are generally not available in Medicaid State plans); (b) forced relocation to a different living arrangement (and sometimes, transfer trauma); and (c) for some people, the loss of Medicaid eligibility.

The proposal offers CMS the ability to take reasonable action that is proportionate to the size of the problem. It will ensure that enforcement does not deny services to individuals served under HCBS waiver programs.

CMS will work with states, universities, foundations and others to ensure that there is an adequate base of applied research and knowledge to inform public policy-making with regard to (a) the impact of the Medicaid and Medicare actions under the President's Executive Order (b) state initiatives to improve community living services, (c) methods for designing long-term care systems so that they promote the ADA and are capable of addressing expected population growth due to demographic changes, and (d) methods for designing quality assurance and improvement systems uniquely suited for services in one's own home.

BARRIER ADDRESSED BY SOLUTION

The HHS self-evaluation process identified some areas in which data concerning the community integration of individuals with disabilities is nonexistent or insufficient. Moreover, there will be a need to examine the effectiveness of HHS' actions to implement Executive Order 13217 and the New Freedom Initiative. This solution will help focus and organize the gathering and analysis of needed data, and will, in turn, support future public policy-making related to community integration.

SOLUTION V.D.2: ADEQUATE MANAGEMENT INFRASTRUCTURE

CMS will develop an initiative to improve the ability and infrastructure at state and federal levels to account for HCBS and institutional expenditures, analyze trends, identify potential for improvement, implement quality improvement processes, and promote community living through improved management capability and research.

BARRIER ADDRESSED BY SOLUTION

States often lack the infrastructure and specialized expertise to evaluate spending and trends with respect to institutional and community care, engage in long-term planning and systemic reform with respect to community-based care, and manage an expanding community service system effectively.

CMS will offer "phase II" of its "Systems Change Grant Program" to assist states in developing services and infrastructure necessary to enable people of any age or disability to live and participate in their communities.

BARRIERS ADDRESSED BY SOLUTION

Developing more responsive community systems requires a significant investment of planning, collaboration, and systems development. State and local organizations often lack the resources and access to expertise necessary to accomplish these results. More promising results can be achieved from the type of state-federal-private sector partnership that was initiated in calendar year 2001.

During the first phase of HHS' Systems Change for Community Living grants, HHS awarded approximately $64 million in new grants to 37 states and one territory to develop systemic changes to promote community integration. This includes $40.8 million awarded to states designing and implementing effective and enduring improvements in community long-term support systems to enable children and adults with disabilities or long-term illnesses to live and participate in their communities. Another $7.6 million was awarded to support states' efforts to improve personal assistance services that are consumer-directed or offer maximum individual control. Next, $11.1 million in "Nursing Facility Transitions" grants was awarded to help states transition eligible individuals from nursing facilities to the community. Finally, $4.9 million was awarded to states to provide technical assistance, training and information to states, consumers, families and other agencies and organizations.

"Phase II" of the system change grants would help states take their efforts to achieve systemic reform to the next level. Applications for assistance during the first phase came from 51 states and territories, and totaled $240 million in proposed improvements. However, CMS was only able to respond to about 30 percent of such plans. Establishing a second phase of the program will build on the planning already accomplished by states that responded to the program in calendar year 2001. It will also enable states that were not funded to continue their momentum and augment their efforts to improve their systems.

SOLUTION V.E.2: DISABILITY POLICY FELLOWS PROGRAM

HHS will establish a program to recruit the expertise of talented individuals who have direct personal experience with a major disability to work in HHS agencies for 1-2 year assignments on a full- or part-time basis, under the Intergovernmental Personnel Act (IPA). HHS will also establish a companion initiative to permit key HHS components that administer disability programs to hire, in permanent positions, a limited number of highly capable individuals with a disability. These personnel programs will be undertaken consistent with the federal government's responsibilities under Section 501 of the Rehabilitation Act, Executive Order 13163 and the department's Plan for Employment of People with Disabilities in the federal government.

BARRIER ADDRESSED BY SOLUTION

As a result of the HHS self-evaluation process, some HHS components expressed the view that HHS' work in community integration of individuals with disabilities could be enhanced by increasing the representation of individuals with disabilities in the HHS workforce. These components articulated an interest in reviewing employment practices in order to facilitate the employment of individuals with disabilities. The desirability of increasing the representation of individuals with disabilities in the federal workforce is also reflected by Section 501 of the Rehabilitation Act of 1973. The 1973 Rehabilitation Act requires each federal government agency to create and annually update an affirmative action program for the hiring, placement and advancement of individuals with disabilities. Executive Order 13163 later directed federal agencies to take affirmative steps to hire individuals with disabilities and expand employment outreach efforts, required federal agencies to prepare a plan to increase the opportunities for individuals with disabilities, and estimated that the federal government would be able to increase its hiring of individuals with disabilities over a five-year period. HHS's Plan for Employment of People with Disabilities in the federal government includes such objectives as recruiting people with disabilities widely for job opportunities at all levels. The HHS Plan also includes such strategies as developing and implementing strategies to meet specific hiring goals and to continuously improve the quality of work life for individuals with disabilities. HHS will establish the Disability Policy Fellows Program by March 1, 2002.

Last revised: April 21, 2002