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

Appendix A: Barriers to Community Living

Introduction
HHS Component Self-Assessment
Structure and Financing of Programs Administered or Funded by HHS
1. Medicaid
   1. Institutional Bias
   2. Eligibility Restrictions
2. Medicare
   1. Medicare Home Health Restrictions
   2. Medicare Durable Medical Equipment (DME) Restrictions
3. Array of Services
   1. Persons with Mental Illnesses
   2. Racial and Ethnic Minorities
   3. Rural Populations
   4. Children and Adolescents
   5. Transition Services
   6. Workforce Shortages
   7. Limited Access to Assistive Technology
Responsiveness of Services to Meet Individual Needs
Supports for Families and Informal Caregivers
Fragmentation and Lack of Coordination
Accountability and Legal Compliance
Conclusion

INTRODUCTION

Review and analysis of all the input received during HHS' self-evaluation process, including stakeholder input, revealed barriers to community living for people with disabilities that fit into five major categories:

• System structure and financing;
• Responsiveness of services to individual needs;
• Supports for family and informal caregivers;
• Fragmentation and lack of coordination between programs and agencies; and
• Accountability and legal compliance.

HHS COMPONENT SELF-ASSESSMENT

1. Whether any policy, program, statute or regulation inhibited the ability of individuals with disabilities to live in the community; and
2. Whether any of these could be revised or modified to improve the availability of community-based services for people with disabilities.

Agencies were also asked to summarize current or planned activities or programs that promote the ability of individuals with disabilities to live in home and community-based settings.

To complete these tasks, the components reviewed and examined: policies and procedures pertaining to program administration; regulations that relate to the provision of community services; laws related to how community services and supports are structured; program guidance documents, data systems and research related to the provision of community services; budget and program planning documents; information about past and current component activities; and administrative materials such as contract documents and human resource policies.

A reporting form, or template, was drafted by the "Report Task Force," a subgroup of the New Freedom Initiative Group, for each component's use in the self-assessment process. Completed templates were reviewed by the Report Task Force, which evaluated the submissions and asked components to supplement where necessary. The Report Task Force then drafted and distributed a matrix summarizing all component submissions. The primary barriers and solutions identified by components to address these barriers, as a result of both the self-evaluation and public input processes, are discussed in Chapter III.

Biweekly meetings of the New Freedom Initiative Group permitted discussion of Report progress, particularly around the creation of vehicles through which to obtain the public input required by the Order. The Preliminary Report of Federal Agencies, Actions to Eliminate Barriers and Promote Community Integration released on December 21, 2001, describes the public input process in detail, including the combined effort of 10 federal agencies spearheaded by HHS to gather input via three specially created avenues -- a day-long "National Listening Session;" a national toll free conference call; and a formal public comment period (via notice published in the Federal Register).

Finally, as part of the self-evaluation, HHS reviewed existing studies conducted both in the public and private sectors regarding barriers to community living for people with disabilities. Each component within HHS was asked to identify existing reports and research. Hundreds of studies were identified through this process. HHS staff narrowed the list by concentrating on recent studies (primarily within the past three years) and those considered significant because they represent a comprehensive, in-depth or unique review of the issues. As a result, HHS read, reviewed and summarized 54 studies, which helped to frame our analytic approach to the agency's self-evaluation.

Following the component self-assessment and the receipt of public input, the New Freedom Initiative Group formed subgroups around the critical subject areas that emerged. These "solutions subgroups" analyzed solutions offered in both the component assessment process and through the public input process and drafted recommendations. The solutions were vetted in multiple meetings of these groups and circulated and revised to achieve consensus. The Report Task Force relied on this process and other information to submit a draft report to Secretary Thompson for his review and approval.

Medicaid

Medicaid is a major source of funding for nursing homes and intermediate care facilities. Increasingly, it also pays for community-based care either through optional services or through home and community-based waiver programs. The barriers posed by Medicaid to community living for people with disabilities were a significant focus of public input. Indeed, a large percentage of written comments received during the public input process identified Medicaid's structure and financing as chief among the barriers to achieving community living.
Table: Percentage of Written Comments
Identifying Medicaid Structure and Financing
as a Major Barrier to Community Living


Text Version

1. Institutional Bias

   Institutional bias in Medicaid was identified as a major barrier by HHS components and all stakeholder groups including state and local governments. Research confirms that institutional bias is a significant obstacle to community living.¹⁰ Institutional bias stems largely from the way in which the Medicaid program was structured nearly 40 years ago. Today, approximately 75 percent of Medicaid long-term care funding goes to pay for institutional care, while only 25 percent is directed toward home-and community-based services.

   As studies have documented, institutional bias is embedded in statutory and regulatory provisions that define the Medicaid benefit package and eligibility rules.¹¹ Under the federal Medicaid program, states are required to provide nursing facility benefits to any individual aged 21 or over who meets financial eligibility criteria and requires a nursing facility level of care. Once an individual is eligible to receive nursing facility care, the Medicaid benefit is comprehensive.

   In contrast, Medicaid-funded community-based care,¹² such as personal care and rehabilitation services,¹³ are provided at a state's option. States that want to provide more comprehensive community-based care for individuals who meet a nursing facility level of care must obtain a waiver of federal Medicaid program rules. However, waiver services also are optional, and states have broad discretion to limit the number of people served in the waiver and to limit the array or amount of services or impose service caps that limit the quantity of services provided. In addition, many waiver programs have long waiting lists of individuals waiting for these services¹⁴ -- a source of great frustration for consumers and family members:

   Waivers are not enough; they are limited in number and scope, and far too many people are languishing for years on waiting lists for them. My own grandfather died while awaiting proper supports to return him to his own home from the nursing home where he was stuck. -- Family Member, Written Public Comments.

   In describing the barriers to community living posed by institutional bias, HHS components identified ways that Medicaid eligibility rules foster reliance on institutional care. Many adults are ineligible for Medicaid until they are both poor and totally disabled. This means that by the time they are sick enough to qualify for Medicaid, they may not have the financial resources needed to pay for their rent and other basic needs. When care is provided in a nursing home, Medicaid's financial eligibility rules are more generous. For example, an individual can qualify for Medicaid in a nursing home with income up to 300 percent of the federal poverty level. Unless an exception is granted under a waiver, this rule generally does not apply to an individual who lives in the community.¹⁵

   For married couples, if one spouse needs nursing home care, special rules protect the income and assets of the spouse who remains in the community up to certain limits. There are no financial protections, however, for a husband or wife if the spouse in need of care remains at home. Families who are caring for a disabled child face similar problems. Regardless of the specific eligibility group involved, generally, the parents' income is not counted in determining Medicaid eligibility for a child if the child is placed in an institution. In contrast, family income is counted to determine Medicaid eligibility if the family cares for their child at home. This means that to get help, many families have no choice but to institutionalize their child.¹⁶

   Ever since [my son] was born our family has not been serviced properly by the agencies who are supposed to provide us with what we need to keep him at home. Yet, if we decide to place [my son] in an out-of-home placement center these same agencies have no problem funding the vendors/caregivers who operate the home ... My question to you is, 'Why can't the money follow the child?' As an involved parent, I know my child better than anyone. I know his wants and needs. So, why go through such great expense by hiring an outside person to replace the irreplaceable -- an involved parent. -- Family Member, Written Public Comments.

   I find it difficult to fathom why the states are willing to pay for me to place my son in an institution, paying several times over what it would cost for me to care for him, and yet not help me and my family financially to care for my son in the best environment for our son -- our home. -- Family Member, Written Public Comments.

   States share the view that the structure of Medicaid favors institutional care. They point out that because nursing facility services are required, optional "home and community-based services are more at risk in times of budget problems than nursing home care." Further, they view institutional bias in Medicaid as antithetical to the Olmstead decision and a major impediment to compliance with the Americans with Disabilities Act.

   Both Medicare and Medicaid are fraught with institutional bias. Given the clear language in the Americans with Disabilities Act (ADA) and the Supreme Court's language in Olmstead ... this bias needs to be eliminated and replaced with bias (or presumption) that places home and community-based options as the presumptively preferred ones and makes institutional options the choice of last resort. -- State Agency, Written Public Comments.

2. Eligibility Restrictions

   Eligibility restrictions were identified as a significant barrier to access. As a general rule, individuals with disabilities must meet two types of eligibility requirements of a specific eligibility group in order to receive Medicaid benefits. Each eligibility group has financial (income and resource standards) and categorical (e.g., aged, blind, disabled) requirements.

   One issue identified by numerous responders is the caps on income eligibility. In states that have not opted to allow applicants to spend down their income to the Medicaid income eligibility level, persons whose income exceeds Medicaid limits are ineligible for medical assistance. Yet, these individuals may have very low-incomes and may not be able to afford the care they need. Individuals with disabilities and their families describe these caps as a "cliff without a safety net."

   Having applied for Medicaid, [my son] was denied due to the meager $330 a month [income limit] level. The cost of care for a brain-injured person is huge... the $330 [income limit] is a joke. It might just as well be $3.30. It will not make it. His disability income is fully utilized for partial room and board services.... This leaves [my son] in dire need of financial assistance for doctors, medications, disability services and sufficient room and board ... his disability income won't even come close to their expenses. -- Family Member, National Listening Session

   Although 35 states permit individuals to spend down their income on a periodic basis to meet financial eligibility requirements, the spend down levels may be so low that an individual is left with insufficient income to cover basic living expenses. For example, in 60 percent of states that provide services to persons who are "medically needy" (21 of 35), the medically needy income level is below the level for Supplemental Security Income (SSI) benefits (currently $512 a month for an individual). Of those 21 states, seven have levels that are less than 50 percent of the SSI rate. A new federal rule promulgated last year gives spend down states the option to allow individuals to meet the spend down level while retaining more of their income for basic necessities,¹⁷ but few states have chosen this option.

   I have concerns about my employee, a person with a significant disability who has chosen to live in the community.... She has a small amount of unearned income, which is supplemented by Social Security and income from her part-time job. She is an excellent employee, well liked by her co-workers, and very productive. But she needs attendant care to get out of bed in the morning and get dressed for work.... Due to the small amount of unearned income, she does not qualify for any program that would help her get attendant services. The spend down required to be able to buy into Medic[aid] is excessive. If she bought into Medic[aid], she'd lose her home. Her income is going to pay her mortgage and pay for and support her van which is necessary to get to work, to medical services, get groceries, etc. She has been paying for attendant care services out of pocket, but that eats into her income so she isn't able to purchase assistive aids that she needs for continued independence as her disability progresses. -- Consumer/Employer, Written Public Comments.

Medicare

Since 1972, Medicare has covered people under age 65 who have received Social Security Disability Insurance benefits for at least 24 months. Today, Medicare covers about 5 million people under age 65 with disabilities, a number which is expected to grow to more than 9 million by 2020. HHS components and public respondents identified barriers related to the Medicare program.
1. Medicare Home Health Restrictions

   One of the most important Medicare benefits for individuals with disabilities is home health care. Approximately 3 million Medicare beneficiaries receive home health services, receiving an average of 80 home health visits per year. Sixty-six percent of Medicare home health users are aged 75 and older, and 25 percent of Medicare home health users are aged 85 and older.¹⁸

   Medicare covers part-time or intermittent skilled nursing care and home health aides, physical therapy, speech language pathology and occupational therapy for as long as a doctor prescribes it, medical social services, certain medical supplies and medical equipment in the community. To qualify for these services, an individual must meet statutory eligibility criteria.

   One of Medicaid's statutory criteria is that eligible individuals must be "homebound." The homebound requirement was identified as a significant barrier to community living by HHS components and in written comments by 55 individuals and organizations representing consumers, family members, providers and state officials. Individuals emphasized how difficult this requirement made community living since, in effect, people become "prisoners in their own homes."

   I'm a C-7 Quad. I'm 34 and I live alone in Livingston Co. KY. I was 22 when I was injured. I had a good paying job when I was hurt.... My doctor put me on homebound so I can get a health care aid to help me with my showers and other bathroom needs. I am told by my care-giver that I'm not to leave my home. I can't date, go to college even though I got a scholarship. I can't better myself because of homebound rules. I could be working and paying taxes if these rules were not so strict. -- Consumer, Written Public Comments.

   I work with two young men who are both quadriplegic. Both have been married and divorced. They constantly tell me of how they miss interacting with people due to the homebound rule. They both want to be in a relationship but have no opportunity to do so since they are primarily at home. Both have transportation available but can't drive as they would be removed from services. One has a son who is very active in sports. This father can not be a father due to the restrictions in place. If he was caught attending his son's baseball game, he would be dropped from the program which he needs. This has happened to several people I know already. The sad thing is that often when people acquire a disability, some give up. But there is a small percentage who wish to continue on with their life. They have dreams, goals and wishes for the future. All of which are discouraged because of needing 6-8 hours of help a week. -- Provider, Written Public Comments.

2. Medicare Durable Medical Equipment (DME) Restrictions

   Another concern identified by public respondents is how the Medicare program authorizes payment for durable medical equipment (DME) (wheelchairs, canes, walkers, etc.). Currently the Medicare program will purchase or rent DME to be "used in the patient's home." Considerable concern was expressed by public respondents that if coverage of DME is restricted to items used only "in the patient's home" then it does not support the full integration of people with disabilities in their own communities. A second concern raised by HHS components is that Medicare coverage for DME is not available prior to discharge. Thus, hospitalized or institutionalized individuals have little or no opportunity to learn how to use needed equipment before being discharged to the community.

   When the guidelines only cover a wheelchair that will allow you to be mobile within your home, how can you be a part of a community? ...these as well as many other policies ... discourage the young disabled from even trying to be really a productive community-based person. -- Family Member

   We have an active caseload of about 1,000 clients, 40 percent to 50 percent of whom rely on Medicare ... I, as an OT [Occupational Therapist] incorporate best practices outlined by American OT Association into my clinical practice.... However, current Medicare policy creates a clinical dilemma for myself and other clinicians as well. Specifically we have to choose between our professional experience and ethical obligations to make the mobility device recommendations functional for them or make recommendation that will satisfy the Medicare limitations on mobility device coverage.... If I follow best practices, then I will recommend devices that will support the highest level of independence but may not be affordable to the person should they choose to purchase it on their own. If I tailor my policy to Medicare policies, I'm limited to recommending equipment which will allow the client to get around within the four walls of their home only. Medicare policy shouldn't force such a choice on people. Public policies [should] somehow complement each other and strive toward the same goals.... Current interpretation use by the CMS and the DMERC [Durable Medical Equipment Regional Carrier] [are] significantly limiting access to community services for people with disabilities. -- Provider, National Listening Session.

Array of Services

HHS components and public respondents identified numerous service gaps and unmet needs affecting various populations. Although lack of funding was identified as a major reason why specific services are lacking or lacking in sufficient quantity, other respondents identified service gaps resulting from the allocation of resources and the structural impediments within existing programs.
1. Persons with Mental Illnesses

   One of the most serious gaps identified by respondents was the inadequacy of mental health and substance abuse services. Indeed, as a report prepared for SAMHSA's Center for Mental Health Services recently observed, a variety of "persistent clinical, service system and financial barriers" have contributed to the continued institutionalization of tens of thousands of individuals with serious mental illness, despite the fact that a "wealth of research and service knowledge" exists regarding effective means of helping people with serious mental illness achieve and maintain stable community living.¹⁹ Specifically, this report notes that individuals with mental illness lack access to appropriate trauma care, new antipsychotic medications, treatment for co-occurring disorders, and services for general and mental health.²⁰ A similar report regarding the need for community-based care for children with emotional disturbance found that "[s]adly, there are few places in the United States where availability and use of mental health services [for these children] approach the level of need."²¹ This report identifies clinical, service fragmentation and financial barriers to care for children with emotional disturbance, and describes the often bleak results for children who need adequate community care but do not receive it.²²

   In order to understand why Medicaid payment is so limited for people with serious mental illness, it is important to understand that mental health treatment is not a category of coverage in the Medicaid program. Instead, coverage of mental health treatment is a patchwork of Medicaid mandatory services, such as physician services as well as optional services such as prescription drugs and the clinic, rehabilitation and personal care options.

   Many federal programs are a lifeline or should be a lifeline for people with mental illness, but it turns out these are mostly not mental health programs, per se; and the mental health component of each program is relatively small potatoes, and tends to get isolated and we think, inadequate attention. For example, Medicaid is the largest federal mental health program, although depending on how you count mental health costs are only 5 to 10 percent of Medicaid. -- National Association, National Listening Session.

   Another barrier is the effect of the statutory exclusion on Medicaid payments for care in an Institution for Mental Diseases (IMD) and how this exclusion works in conjunction with the cost effectiveness requirements of Medicaid waivers to limit the availability of HCBS waiver services to adults with serious mental illness. Title XIX of the Social Security Act prohibits federal payments for persons 21 to 65 years of age residing in an IMD. Thus, there are few federal dollars supporting people with serious mental illness in state psychiatric hospitals. 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 neutral to the federal government. Since historically, few federal dollars have flowed to institutions that provide care to people with serious mental illness, states generally have not succeeded in obtaining approval of waiver programs for people with serious mental illness. Studies document that many policy makers have long regarded the IMD exclusion as a barrier to community-based care for individuals with mental illness,²³ as comments received during the public input process reflect.

   We are not asking you to rescind [the IMD]. However, I would like to point out that what has happened over the course of time dating back to the 1960's is that without Medicaid reimbursement for these services that has put us further behind with respect to Medicaid reimbursement in general and has made it very, very difficult for us to use the federal waiver programs because we can't cap out of something we didn't have. -- State Agency, National Listening Session.

   For children with serious emotional disturbances, the lack of compliance with the requirements of Medicaid's Early, Periodic, Screening, Diagnosis and Treatment Program (EPSDT) is another major concern.

   One of the required benefits of the Medicaid Program is Early Periodic Screening, Diagnosis and Treatment (EPSDT). This benefit requires that children be periodically screened for their physical and mental health needs. If a diagnosis is discovered, the state must pay for treatment, regardless of whether or not the diagnosis is covered in the Medicaid plan. While this benefit has great potential to help children, especially those with mental health needs, it has not been well implemented or enforced. In 1996, only 37 percent of the 22.9 million children eligible for EPSDT received a medical screening through the program. This has implications for the State Children's Health Insurance Program as well, since the Medicaid expansion method is one of the three types of programs that states can adopt. -- National Association, Written Public Comments.

   Respondents also identified the need to improve funding flexibility in block grant programs that pay for services for individuals with mental illness and substance abuse.

   Currently, inflexible rules governing expenditure of mental health and substance abuse block grant funds bar states from adequately investing in services targeted to individuals with mental illnesses and co-occurring substance abuse disorders. Numerous peer-reviewed studies have demonstrated that integrated treatment (as opposed to parallel and sequential treatment) is most effective in serving persons with co-occurring mental illness and addictive disorders. -- National Association, Written Public Comments.

   Individuals with co-occurring mental illness and addiction disorders face additional barriers. This population, estimated to include approximately 10 million to 12 million Americans, are at great risk for being institutionalized, incarcerated and homeless. Research amassed over the past 10 years and summarized in 1999 in the Surgeon General's Report on Mental Health²⁴ supports a shift to treatment that combines interventions directed simultaneously to both conditions by the same providers. According to the Surgeon General's report, combined treatment is effective at engaging people with both diagnoses in outpatient services, maintaining continuity and consistency of care, reducing hospitalization and decreasing substance abuse while, at the same time, improving social functioning. Yet, access to such combined treatment remains limited.

   One result of the lack of adequate treatment for adults with mental illness and co-occurring substance abuse disorders has been the transinstitutionalization of these individuals from the mental health system to the criminal justice system.²⁵ A report by the United States Department of Justice (DOJ) indicated that approximately 283,800 people with mental illness are confined in local jails and state and federal prisons.²⁶ Respondents to the HHS public input process also articulated this problem.

   Most people with mental illness are released from jail without income support (SSI/SSDI) or medical benefits (Medicaid/Medicare) resulting in frequent decompensation and re-arrest. -- National Association, Written Public Comments.

   Prisons have become the institutional home of growing numbers of people with severe mental illness. Community services for these people have been inadequate, causing them to get entangled with the legal system. -- State Advisory Board

   In addition, respondents criticized the lack of parity between treatment for mental health disorders and physical disorders in Medicare.

   Medicare covers fewer days for hospitalizations for mental illness than for other hospitalizations. Inadequate treatment of a mental illness may lead to further institutionalization. -- State Agency, Written Public Comments.

   Medicare pays only 50 percent of the allowed amount for mental health services, whereas for other services Medicare pays 80 percent of the allowed amount. Consumers with limited incomes may forgo treatment. When mental health problems are left untreated they can escalate and result in institutionalization. -- State Agency, Written Public Comments.

   Finally, many respondents identified stigma and prejudice as a continuing barrier to appropriate treatment for adults and children with serious mental illness.

   In order for individuals with disabilities to be afforded the same opportunities as the majority of the population, barriers such as lack of self-esteem and lack of opportunities due to discrimination and stereotyping attitudes need to be addressed. -- State Agency, National Listening Session.

   ... [A]ddress the issues of discrimination [for persons with mental illness] -- Researcher, National Listening Session.

   Education and outreach efforts should be made available to dispel some of the myths. -- Consumer/National Association, National Listening Session.

   Too many public mental health programs treat people with psychiatric disabilities like the proverbial glass that is half, or a third, or a tenth full -- or completely empty! Providers become stuck in their negative view of the consumer because they have too much information about the problem and not enough information about strengths and solutions. No one survives with a mental illness without developing some strengths. -- Advocate, Written Public Comments.

2. Racial and Ethnic Minorities

   Many respondents noted that targeting specific populations for receipt of services results in inequity across populations, which in turn causes some groups to receive inadequate services. Public respondents raised a passionate plea for attention to issues of discrimination and the need to ensure that people with physical and mental disabilities who are members of racial and ethnic minority groups have access to treatment that is culturally appropriate and linguistically accessible.

   I would like to talk a tiny bit about disparities. African Americans have proven to have less than one percent of the resources, even that little bit that's given to the consumer movement. We run nothing, we have nothing, and we are not provided the necessary technical assistance that our numbers warrant. -- Consumer, National Listening Session.

   There are also communication accessibility barriers. This could be interpreter services or translator services for people without disabilities who speak a different language. -- National Association, National Listening Session.

   HHS' Office of Minority Health (OMH) identified the need for culturally and linguistically appropriate services for minority individuals with disabilities and their families. In addition, the Administration for Children and Families (ACF) reported that although refugees with disabilities qualify for the same programs and services as American citizens with disabilities, refugees with disabilities who have limited English proficiency are often denied access to programs and services intended for people with disabilities because of language barriers.

   A review of existing literature further evidences the need for culturally and linguistically appropriate health and social services. For example, a study examining the delivery of services to older individuals of color (including African Americans, Hispanics, Asian Americans and Pacific Islanders and American Indians and Alaska Natives) identified such barriers as the inability to speak English, lack of bilingual and bicultural staff, cultural differences that associate stigma with the receipt of public services, and distrust of service providers.²⁷ Language differences, distrust of medical providers and stigma were also identified as major barriers to services for individuals with HIV/AIDS who are members of racial and ethnic minority groups.²⁸

   In addition, in an August 2001 report, the U.S. Surgeon General described disparities in and barriers to adequate mental health care for members of racial and ethnic minority groups.²⁹ The Surgeon General examined mental health issues for four groups of racial and ethnic minorities: (1) African Americans; (2) American Indians and Alaska Natives; (3) Asian Americans and Pacific Islanders; and (4) Hispanic Americans, and described significant disparities in the access, quality and availability of mental health services for these populations. For example, the report states that African Americans with mental health needs are unlikely to receive treatment and more likely to be incorrectly diagnosed than white Americans. The report describes American Indians and Alaska Natives as suffering "a disproportionate burden of mental health problems compared with other Americans."³⁰

   Further, the report found that Asian Americans and Pacific Islanders have the lowest utilization of mental health services among ethnic populations, and describes a general failure to provide mental health services for the "vast majority" of Latinos who need it, including an "especially pronounced" failure to provide care for immigrant Latinos. The report identifies the "foremost barriers" to mental health care for minority individuals as the cost of care, the societal stigma of mental illness, and the fragmented organization of services. The report also concluded, however, that "disparities also stem from minorities' historical and present day struggles with racism and discrimination, which affect their mental health and contribute to their lower economic, social and political status."³¹ A 1999 report of the Surgeon General found that minority children experience premature terminations of mental health services and poverty-related shorter lengths of stay in treatment programs on a more frequent basis than their majority counterparts.³² Among other findings, this report noted that African-American youth access inpatient care at a higher rate than their numbers would predict, and that these youth are disproportionately represented in child welfare and juvenile justice systems, as well as in special education programs for children with emotional disturbance.³³

   American Indians and Alaska Natives (AI/AN) with disabilities also confront unique barriers to community integration services due to lack of cultural sensitivity and inadequate resources targeted to rural communities and reservations. Data indicates that more than 26 percent of the AI/AN population lives with a significant disability, with tribal leaders reporting that diabetes, alcohol and substance abuse and injuries at crisis proportions in their communities. In addition, many other AI/AN individuals experience the effects of less severe disabilities.

   The prevalence of these disabilities and the obstacles they pose to community integration was noted by both the Indian Health Service (IHS) and the Office for Intergovernmental Affairs (IGA). IHS reported that support services for AI/AN individuals with disabilities are generally lacking. In addition, the IHS indicated that issues affecting this population are made more complex by the great need for assistance and the sovereign status of more than 500 tribal governments. IHS reported that many AI/AN individuals with disabilities are institutionalized due to an inadequate supply of home and reservation-based services, resulting in part from an inadequate utilization of the Medicaid home and community-based waiver program.

   Specific barriers to community integration for AI/AN individuals with disabilities include inadequate resources to support the needs of AI/AN individuals with mental disabilities and insufficient home and community-based services for AI/AN elderly individuals, including those with disabilities. The lack of adequate foster care programs for AI/AN children with special needs poses a barrier to these children's ability to receive care and services in the most integrated setting, because without these services, AI/AN children with disabilities are more likely to be placed in less home-like, more restrictive care settings. Other barriers include a lack of providers or resources to meet the needs of individuals who require special devices to assist with their activities of daily living, and the lack of knowledgeable practitioners to diagnose and treat Fetal Alcohol Syndrome and children's mental illness.

   Public comments mirror IHS' concerns:

   And a lot of types of service providers do not know how to work with us. They use excuses about language, culture and how far and remote we are.... There is a lack of outreach and services and in some instances there are no services. The issues that come up are the vast distances, the lack of cultural awareness and not enough money to get out to the reservations. -- National Organization, National Listening Session.

   Funding and the lack of technical assistance to build rehabilitation programs and independent living centers are scarce on our reservation. Agencies that provide these services do so to the general population but the services do not extend to the Indian reservation. -- Advocate, National Listening Session.

3. Rural Populations

   Barriers related to the inaccessibility of necessary services are often exacerbated for individuals with disabilities who live in rural areas.³⁴ Rural residents have experienced decreased access to health services and experience poorer health and social welfare outcomes.³⁵ These disparities arise in part from the fact that certain services simply may not exist in rural communities.³⁶ For example, one recent study indicated that rural communities may be the last areas to receive advances in mental health care, such as newer antipsychotic medications or specialized treatment programs.³⁷ Many rural residents may also lack access to care because they do not have the income to pay for health and social services.³⁸

4. Children and Adolescents

   The Administration for Children and Families (ACF) and the Indian Health Service (IHS) identified the lack of adequate foster care programs for children with disabilities as a barrier to community integration for these children. As ACF noted, children with disabilities may be more likely to be placed in institutional care because of an inability to access foster care placements in less restrictive settings. Similarly, the Substance Abuse and Mental Health Services Administration (SAMHSA) noted that children with serious emotional disturbances face obstacles to community integration when they experience multiple placements (such as residential treatment centers, hospitals, group homes, and therapeutic and standard foster care) within a short period of time.

   SAMHSA also identified numerous barriers affecting the educational opportunities of children with serious emotional disturbances and other behavioral disorders. The Health Resources and Services Administration (HRSA) identified barriers specific to children with special health care needs, i.e., children who have or are at increased risk for a chronic physical, developmental, behavioral or emotional condition and who require health and related services of a type or amount beyond that required by their peers. HRSA reported that barriers to community integration for these children include lack of access to comprehensive, family-centered, community-based medical care, lack of access to affordable health care, lack of access to early and continuous screening for special health care needs and inadequacies in family partnership and satisfaction. HRSA also noted that the disproportionate representation of children with disabilities in the juvenile justice system is due in part to inadequate community-based services.

   Another service gap identified by HRSA is that there are few coordinated services available to assist children with special health care needs in successfully making the transition from school to post-school life, to independent living, and to the adult health and services systems. Similarly, SAMHSA described youth with serious emotional disorders as being caught between child and adult mental health systems and contending with fragmented service systems. Research confirms that service fragmentation impedes families' ability to obtain integrated, community-based care for children with disabilities. For example, a recent report prepared for SAMHSA's Center for Mental Health Services found that "[i]n many places serious gaps in services [for children with emotional disorders] are a continuing problem," and that "[t]he impact of these gaps is exacerbated by the lack of interagency coordination, diminishing the effectiveness of individual service components and leading to fragmentation and poor outcomes."³⁹

   Public respondents also expressed concerns about the gap in services for adolescents and young adults who are aging out of school-based care systems.

   I am writing this letter to inform you about the services that are provided verses the services that my son ... so desperately needs.... [He] has a severe speech disorder and is also diagnosed with Cerebral Palsy. He is 24 years old and people that know him find him to be an extremely intelligent young man.... Since his graduation three years ago all the great services have been taken away from him.... It has been impossible to get appropriate services for [him] in speech. Medicaid only allows him to be seen in a clinical setting. Working alone on articulation or in a group behind closed doors is not what [he] needs. He needs to learn to communicate in the community so he can have as independent of a life as possible. -- Family member, Written Public Comments.

   ... I work with people transitioning from the education system to the adult service system. The transition process for families is quite difficult, as the adult service system is very different to navigate compared to the education system. People with disabilities have supports in school, then come out of school and placed on waiting lists, while they lose skills. -- Advocate/Provider, Written Public Comments.

5. Transition Services

   Another service gap identified by HHS components and public respondents is the inability to secure timely assistance to support transitions when a person moves from one service system to another. For an individual moving from an institutional setting to the community, transition services and supports include rental deposits, first month's rent, training, counseling, furniture and other basic household items, personal care services, and other supports that would allow an individual to establish their living arrangements and work in the community. These services must not only be available, they must be coordinated to coincide with provision of longer term supports and housing.

   CMS noted that services and resources are inadequate to assist individuals in making the transition from living in a nursing home to living in the community, and CDC made similar observations. HRSA reported that there are inadequate resources to assist incarcerated adults and youth with disabilities to make a successful transition after their release.

6. Workforce Shortages

   HHS components acknowledged that personal care services are essential to the well-being of many individuals with disabilities. Components noted, however, that the current system of personal care in the community is negatively affected by modest reimbursement rates for staff, coupled with little professional organization and formal training. Recruitment and retention of these workers is difficult. As a result, there are far fewer personal care workers than are needed to meet the demand, and the capacity and quality of community services may be limited. These problems are also documented in recent studies. For example, low pay and lack of training for community-based mental health staff have been identified as "significant barriers" to the creation of appropriate residential and treatment programs for individuals with mental illness.⁴⁰ Without sufficient direct care staff in the community, individuals who are institutionalized but who could be appropriately served in the community are unable to leave the institution. Moreover, staff shortages and other inadequacies may place individuals who are currently in the community at risk of returning to institutional care.

   The shortage of paid caregivers was a key concern expressed by many public respondents. Many attributed the shortage of direct care workers to inadequate pay, inequities between the rates paid to institutional workers versus community workers, lack of benefits, and lack of training for these individuals.

   There is a massive shortage of hands-on workers to provide services and support. -- Advocate, National Listening Session.

   Regardless of the state or region, community workers are expected to do their jobs at poverty level wages often without proper wages or employment benefits or with little or no opportunity for advancement. Not surprisingly, there's an ever increasing shortage of these workers. -- National Association, National Listening Session.

7. Limited Access to Assistive Technology

   Almost 70 respondents identified barriers specifically related to assistive technology. The most commonly identified barrier to accessing assistive technology was the lack of a dedicated funding stream and technology transfer program to connect people with the devices they need. Another factor frequently identified was the restrictive definitions used by the federal government for "medical care," "medical necessity," and "durable medical equipment." Research confirms that these definitions result in barriers to community integration and provide support for the view that they should be updated.⁴¹ Many individuals highlighted the restricted definitions of reimbursable devices and emphasized the cost savings that the states and federal government would experience if they would fund a wider range of devices. For example, for $30 a month, one provider wrote that he purchased a cell phone for a consumer that helped him to establish a natural support network and to engage in community activities whenever he wanted without the help of a paid caregiver. Then the Department of Disability Services determined that the cell phone was not medically necessary. Now, this consumer can only access the community with the help of paid staff at a monthly cost of $300, ten times the cost of the cell phone.

   For many consumers, lack of access to assistive technology prevents them from attaining self-sufficiency.

   Many Americans with post polio syndrome would like to work again or continue working. Our greatest challenge is not the job itself but getting from the job, getting from home to the job. Insurance companies do not pay for chair lifts, ramps, batteries to operate mechanical devices to get to work. These are very expensive and cost a lot of money. -- National Association, National Listening Session.

   One of the people before talked about getting a replacement wheelchair. He could be totally independent during the day if he had a power chair. The regulations, rules and things, he's been waiting for two years for that chair. He can't get a job. He can't do anything regularly. He can't make plans because he doesn't know if he'll have someone to push him. -- Provider, National Listening Session.

This and other public input suggest that Medicaid structure and financing has driven development of a service delivery system that often does not meet the needs of people with disabilities. For example, inflexible Medicaid categories result in people with similar levels of need obtaining vastly disparate levels of service. One group in this category is individuals who have become disabled due to traumatic brain injury (TBI). Only 22 states have waivers to service individuals with TBI, and these are limited. Individuals who suffer traumatic brain injury as adults (over age 21) find there are few, if any, programs available to address their needs.

I would like to point out the lack of community life, financial assistance for traumatically brain injured individuals. My son is totally disabled with a brain injury. He will not work again, never. ...when you look at all the areas currently being funded, long-term care for the traumatic brain injured is not to be found. As I go around to the state agencies, there are many types of disabilities being funded. [My son] doesn't fit the development disability area, nor does he fit any other types of areas. Drug rehab, alcohol rehab, a lot of programs, but for a traumatic brain injury, TBI, it doesn't exist. -- Family Member, National Listening Session.

[My brother] was 23 when he had a motorcycle accident, ...he could have been cared for under the MR/DD [Mental Retardation/Developmental Disabilities] waiver, had he not had his accident after the age of 22. But he's in between the MR/DD waiver and the Elderly waiver; there's a whole population of disabled people that are left out. -- Family Member, National Listening Session.

Despite similar needs for support and treatment, individuals with certain types of disabilities that fall outside of the categorical designations either because they need a different amount or type of care or fail to meet the diagnostic criteria, have less access to the care they need than others.

Another problem is that under current Medicaid waiver regulations each home and community-based waiver can be targeted to one group.⁴⁴ This means that states must operate multiple waiver programs to serve people with disabilities in their own communities.

The waiver system creates artificial parameters into which real people do not fit, and, therefore, do not get the services they need. They must choose between one waiver that satisfies some of their needs and another waiver that satisfies some different needs. Services should be tailor made. People should not be reduced to slots. -- Professional, National Listening Session.

Today, states are managing 261 separate home and community-based waiver programs. Colorado, for example, operates 10 waiver programs: five distinct waiver programs for individuals with developmental disabilities, one for people with mental illness, one for individuals who have brain injury, one for persons with AIDS, one for the "elderly, blind and disabled," and one for medically fragile children.⁴⁵ Each waiver requires a separate application and often a separate administrative operation, and each must be renewed periodically. Although waivers are viewed as a critically important alternative to Medicaid-funded institutional care, respondents viewed the system as administratively burdensome, and difficult to negotiate and unresponsive to the needs of consumers and their families.

HHS components, families, consumers, their advocates and state agencies were clear about the need for a more flexible, person-centered approach, designed to meet the needs and preferences of each individual with a disability and to give individuals maximum control over how those services are delivered.

Consumer and family member respondents want more control and the ability to make choices about their lives and the services that they receive. Further, they view the ability to exercise control and choice over what services they receive and where they receive them as critical to health and recovery.

The possibility that I will not have to suffer the anguish and despair of surrendering to the anonymity & uncertainties of institutionalized care, but may be given the option of more intimate or "familial" care in a residential setting, right in our home community, not only offers me hope, but may, in some cases, even prolong life itself. -- Consumer, Written Public Comments.

Fifteen years ago ... I was basically ... a bona fide Reaganomics 1980's Cuisinart yuppie. But I became a disabled person.... I lost everything. Now, I live at a poverty level on social security disability.... I have a degenerative disease. It is progressive. It gets worse and it only goes in one direction. And I fear that if I can't have attendant care when I need it in my home, I will be institutionalized. And what I will lose, then, it's the last thing that I have. It's my freedom. As much as I have lost to date, I still have more to lose. -- Advocate, National Listening Session.

Importantly, state and local public authorities also cite the inflexibility of Medicaid program rules as an impediment to improving access to care in the community.

Most states ... would argue that they are strapped by the level of federal regulations that are in the program. -- State Agency, National Listening Session.

Public input strongly suggests that using Medicaid dollars flexibly to meet individualized care needs would allow for the more efficient use of scarce resources and potentially could result in curtailing inappropriate and unnecessary institutionalization.

Public input also suggests strong, broad-based support to increase self-determination and consumer-directed initiatives that allow persons with disabilities and their families to control the dollars and have more choices about who provides services. Respondents including consumers, family members, providers, national associations and government officials believe that allocating funds to the individual (rather than a provider) will enhance the ability of people with disabilities to live in their own communities.

The entire system must be redirected to be centered on persons with disabilities and their family. Systems must be structured in such a way as to fully allow for self-determination by people with disabilities. Funding should go to the consumer of services. -- National Association, National Listening Session.

I also want to recognize the growing number of family caregivers and other informal caregivers in our society. They are often the forgotten ones. But they are the major providers of care to older people in this country.... They actually make up the largest component of our nation's caregiver workforce and will go to great lengths to keep their loved one at home. But they do so at great cost.... Many families eventually burn out from this toll that this role takes on their personal and professional lives. The burden and breakdown of the family support system is often the key reason why an older person is placed in a nursing home. -- Family Member/Provider, National Listening Session.

Developing a partnership with family caregivers -- which constitutes a huge private resource in the country -- can save the government money because it will help families to extend the length of time they are able to help care for their loved one at home and in the community, thus lessening the time spent in more expensive forms of care, such as nursing homes and other out of home placements. -- Family Member/Provider, National Listening Session.

A number of respondents commented that while government programs often are unable or unwilling to provide them with supplemental help in the community, the same government programs will pay the full cost of institutional care.

My own experience and research indicates that if a family institutionalizes its family member with a developmental disability, the government is willing to expend large amounts of taxpayer dollars to support this placement. On the other hand, if they decide to support their family member at home, the federal government sends them into a cycle often leading to poverty. -- National Association, National Listening Session.

As noted in the previous chapter, HHS operates a number of programs designed to provide support to family caregivers. However, these programs, like Medicaid, base eligibility on categorical definitions that exclude many needy families. For example, the Administration on Aging (AoA) National Family Caregiver Support Program, by statute, provides support to family caregivers of older adults and to older family caregivers of children under the age of 19. The latter group is limited to grandparents who are the sole caregivers of grandchildren and those individuals who are affected by mental retardation or who have developmental disabilities. Family caregivers who are taking care of adults want the government to do more to recognize the important role they play and the sacrifices they have made to raise their children with disabilities in their own home.

If we believe in helping the family stay together, if we believe in protecting the life of unborn children (regardless of their genetic makeup), if we believe that strong families are the backbone of this great country, then how can we say no to helping families that have special needs children care for their own children in their own homes with the least amount of stress and barriers to doing that. -- Family Member, Written Public Comments.

[We] encourage the Bush Administration to recognize the unique role of dedicated parents who are saving the taxpayers millions of dollars by preventing or postponing for as long as possible, out-of-home placement of their children. -- State Association, Written Public Comments.

Family members want help, not hand outs.

I did not ask to have a child with a disability. I was given this child as a gift from God. I plan on doing the best I can. All I ask of you is to consider how the States and our nation might help me complete the assignment by removing as many barriers as possible. -- Family Member, Written Public Comments.

The families I've met don't want a "hand out" they want to be productive working citizens. They just want to be sure that their child who needs special and expensive treatment will be provided for. -- Family Member, Written Public Comments.

Public respondents offered numerous comments about the difficulty of accessing services in such a fragmented system. Consumers and their family members confront a daunting array of programs, each with is own rules, restrictions and administrative structures. They express frustration with the challenges of simply completing application forms and complying with onerous requirements such as face to face interviews. Negotiating these programs and trying to make them all fit, especially when consumers and their family members lack accurate information or need assistance to obtain information or to understand the information that has been provided very difficult.

I am the single parent of two special needs children. I receive $360 month[ly] child support. It took several years for me to learn that I even qualified for funding of any kind. -- Family member, Written Public Comments.

I was first told that I had to go to an office for my zip that requires three buses to get to and walking and standing which with joint involvement has been difficult even though the other office only required one bus to get to. I was told that when I got feeling better to come in and complete an application, even though I had no money. Found out after the fact that they could have done a phone interview. -- Consumer, Written Public Comments.

Some respondents suggested that there was miscommunication among federal, state, and local programs, which often resulted in fragmentation of delivery of services. Because of duplicative efforts, the agencies were not providing the most efficient delivery of services. In addition, because programs are not always in tune with what others were providing, people with disabilities are not aware of program offerings and have a difficult time accessing information.

Here ... Medicaid runs several different programs. Unfortunately, each program does not know what the other program has; and therefore the consumers are lacking the information to what is provided by Medicaid, and that is my only concern, is that the communication of Medicaid between consumer and inter-departments is lacking. There needs to be an improvement between communication of Medicaid and also the training of the staff, not on just a federal level but also on the local level. -- Provider, National Teleconference.

HHS components acknowledge that individuals with disabilities and their families too often lack the information needed to access and effectively utilize services and supports that could facilitate community integration. For example, the Administration for Children and Families (ACF) noted that there is insufficient training and information for youth with disabilities in foster care placements to create and carry out plans to live in a community-based setting, as independently as possible. The Administration on Aging (AoA) reported that older adults and their families lack information about long-term care services. The Substance Abuse and Mental Health Services Administration (SAMHSA) identified a lack of awareness in the mental health community of relevant technologies for people with psychiatric and co-occurring disabilities.

The problem of fragmentation is exacerbated further because people with disabilities often must rely on services and support from multiple agencies and programs, including those that fall outside the jurisdiction of HHS. For example:

In order for persons with psychiatric disabilities to receive the range of services needed to find and keep jobs, they must enroll in two different systems - Medicaid and Vocational Rehabilitation. -- National Association, Written Public Comments.

Generally, public respondents felt there is little coordination between programs even when they serve the same or similar populations. Lack of coordination exists at the local, state and national level.

The lack of coordination, cooperation, and integration at the federal level agencies created multi[ple] difficulties and barriers for persons with mental illness, with or without substance abuse issues.... The absence of bringing together primary health care and mental health and substance abuse is a waste of resources and opportunities. -- Affiliation unknown, Written Public Comments.

HHS components also identified lack of coordination across federal agencies and programs as a barrier to community living. For example, SAMHSA reported that limited coordinated efforts among mental health, substance abuse, employment, and vocational rehabilitation providers creates unnecessary barriers that prevent individuals with psychiatric and co-occurring disabilities from attaining competitive jobs. SAMHSA, AoA, and other components that identified barriers in non-HHS programs such as housing, transportation and education generally noted that a contributing factor to these barriers is the lack of communication and coordination between federal agencies as to how they can work together to facilitate community integration.

The HHS self-evaluation revealed that some barriers result from the lack of a common definition of "disability" in eligibility and service criteria in federal programs. A 1996 GAO study identified more than 14 different definitions of disability used by federal programs alone and many of these definitions provided considerable agency and state discretion in eligibility determination. These differences among programs can make it extremely difficult for people with disabilities to access the full array of community supports they need. For example, a person with mental illness may need a guaranteed amount of monthly income to pay for medications and housing, in addition to job coaching, in order to remain successfully employed in the community. Job coach services, provided through the Department of Education define eligibility in terms of mental impairment or physical impairment; however, the Social Security Administration's criteria for SSDI or SSI define disability in terms of an inability to work.

If the individual could more easily access prescription drug coverage through Medicaid and housing assistance through HUD they may not need the income provided by SSDI or SSI, but both HHS' Medicaid program and HUD's Section 8 Housing program have different means-testing and disability eligibility requirements. To become eligible for these programs, the individual would have to stop working, or significantly decrease the amount of money derived from working.

Moreover, federal laws authorizing or related to service development for individuals with disabilities have largely been shaped by the need for a particular set of services, some targeted for particular ages of people with disabilities or sub-populations of people with disabilities. The Rehabilitation Act of 1973 authorizes federal support for training and placing persons with mental and physical disabilities into full-time, part-time or supported employment. The Social Security Act of 1965 authorizes support to provide health care and income support for low-income persons with disabilities. The Housing Act of 1937 authorizes funds to assist low-income persons with disabilities and frail elderly obtain affordable housing. The statutes focus many agencies on providing a set of services (e.g., education, health, housing, income support) without an explicit program focus on the goal of community integration.

I have a 19 year old with Autism. After moving to this state 6 years ago, it has been a constant battle to get services, and to this day, this state has refused to serve him ... that's the life story here, every agency always has an excuse of why they aren't responsible, and you get so frustrated, you just pay yourself, cause otherwise, you will never get it. I have court orders from the judge for him to get these services, and yet, he still never received them. -- Family member, Written Public Comments.

My friend ... wants residential treatment but due to his need for personal treatment services and wheelchair accessibility, he has been refused by every rehab he has approached in our home state of Maryland.... For people with disabilities who have substance abuse problems, we beseech you, enforce the law. -- Consumer/Provider, National Listening Session.

Public respondents also see a need for greater technical assistance and guidance to promote compliance with the Olmstead decision. They want greater federal guidance and help to assess and identify people with disabilities who are inappropriately institutionalized, and they want guidance on effective planning. Consumers, in particular, are seeking greater protection of their rights in the community to make their own choices and accept risk.

We must do a better job of enforcing existing civil rights laws and do whatever is necessary to ensure quality and put an end to abuse. -- National Association, National Listening Session.

[S]tates need the flexibility and the funding to implement the Olmstead decision, but they also must be held accountable by the HHS Office of Civil Rights. -- Advocate, National Listening Session.

Within HHS, the OCR identified a lack of coordination among HHS components and federal agencies as a barrier to accountability and compliance with the ADA and the Olmstead decision. With greater coordination, OCR noted, HHS could be more effective in providing appropriate technical assistance to states, localities and others who need guidance in complying with their legal obligations.

Another barrier identified by HHS components is the lack of comparable data about persons with disabilities and their needs. Although data often exists at the state level, it is generally not quantifiable or comparable across systems.

Although lack of funding is a concern, many barriers exist due to the structure of programs that fund services, most notably Medicaid. Others stem from poor coordination between the various federal, state and local authorities, and the need to ensure that consumers and family members have better and more accurate information about available programs and services. Clearly, stakeholders are looking to the federal government to implement solutions to address these critical concerns.

Under the leadership of President Bush, this Administration is already doing much to address barriers to community integration. Executive Order 13217 makes clear, however, the President's recognition that barriers remain, and that it is only through coordinated federal agency action that community integration for people with disabilities will be achieved.

____________________

10. Charlene Harrington, et. al., A review of Federal Statutes and Regulations for Personal Care and Home and Community Based Services: A Final Report, University of California Department of Social & Behavioral Sciences (May 1998, revised July 1999) [hereafter "Harrington et al."].
11. Williams, Home and Community-Based Services Work Group Progress Report, Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services (1999) [hereafter Williams]; Pamela Dautel and Lex Frieden, Consumer Choice and Control: Personal Attendant Services and Supports in America (1999).
12. Since the mid-1970's, states have had the option to include coverage for personal care services in their Medicaid programs. Personal care services may include assistance with Activities of Daily Living (ADLs) such as bathing, toileting and dressing, as well as Instrumental Activities of Daily Living (ADLs) such as personal hygiene, light housework, laundry, meal preparation, grocery shopping, money management, etc. For persons with cognitive impairments, personal care services may also include cueing, along with supervision, to ensure that individuals perform the tasks properly. In 2000, 27 states covered personal care services. U.S. Dept. of Health and Human Services, Understanding Medicaid Home and Community Services: A Primer 12 (October 2000)(herinafter "HCBS Primer").
13. Medicaid's rehabilitation option allows states to provide a range of supportive services to people in home and community settings. Medicaid defines rehabilitation services as any medical or remedial services recommended by a physical for maximum reduction of a recipient to his or her best possible functional level. Rehabilitation services may be provided to people with either physical or mental disabilities. Id. at 11.
14. For example, one study estimates that between 80,000 and 200,000 individuals with developmental disabilities experience significant delays in receiving services because these individuals are on waiting lists for care. Gary Smith, Closing the Gap - Addressing the Needs of People with Developmental Disabilities Waiting for Supports, National Association of State Directors of Developmental Disabilities Services (1999). Further, the evidence suggests that pressure on waiting lists will intensify as the population changes. Arlene S. Bierman et al., Assessing Access as a First Step Toward Improving the Quality of Care for Very Old Adults, J Ambulatory Care Manage (reprinted by AHCPR 1998).
15. Studies confirm that eligibility rules, such as financial eligibility requirements for personal care that are more stringent than requirements for institutional care, contribute to institutional bias. See Harrington, et al.; Williams.
16. The Katie Beckett or TEFRA option, enacted in 1982, enables states to provide Medicaid to certain children with disabilities living at home who need extensive care but who, without the option, would be unable to qualify because their parents' income or resources put them above the financial eligibility cutoff. The TEFRA option is limited in the following ways. First, home care for the child must be appropriate. Second, the estimated cost of community services for the child may not exceed the cost of institutional care. Third, the child must require the level of care normally provided in an institution, making the TEFRA option unavailable to children whose disabilities do not require this level of care. The Katie Beckett option is available in 19 states.
17. 42 C.F.R. Section 435.1007.
18. Who Uses Medicare's Home Health Benefit? AARP Public Policy Institute (1998).
19. Advocates for Human Potential, Overcoming Barriers to Community Integration for People with Mental Illness (2001) (hereafter "Overcoming Barriers"). This report also describes potential solutions to the problems it identifies.
20. Overcoming Barriers. Other studies have also documented that lack of coordination has a negative impact on the quality and effectiveness of treatment for individuals with co-occurring mental health and substance abuse disorders. William Moran et al., Services to Persons with Co-occurring Mental Health and Substance Abuse Disorders - Provider Perspectives - Program Descriptions, Office of Inspector General, U.S. Department of Health and Human Services (1994).
21. Advocates for Human Potential, Overcoming Barriers to Serving Our Children in the Community (2001) (hereafter "Serving Our Children").
22. Serving Our Children. This report also describes a variety of solutions and best practices to address these problems.
23. Overcoming Barriers.
24. Mental Health: A Report of the Surgeon General (1999).
25. Linda Teplin, The Criminalization of the Mentally Ill: Speculation in Search of Data, Psychological Bulletin 94:54-67 (1983).
26. Paula Ditton, Mental Health and Treatment of Inmates and Probationers, U.S. Department of Justice, Bureau of Justice Statistics Special Report (1999).
27. American Society on Aging, Serving Elders of Color: Challenges to providers and the Aging Network, Administration on Aging, U.S. Department of Health and Human Services (1992).
28. Health Resources and Services Administration HIV/AIDS Bureau, Delivering HIV Services to Vulnerable Populations: What Have We Learned? (Report #6), U.S. Department of Health and Human Services (2000).
29. Office of the Surgeon General, Mental Health: Culture, Race and Ethnicity: A Report of the Surgeon General, U.S. Department of Health and Human Services (2001) (hereafter "Mental Health: Culture, Race and Ethnicity").
30. Mental Health: Culture, Race and Ethnicity.
31. Mental Health: Culture, Race and Ethnicity.
32. Serving Our Children (describing findings of Mental Health: A Report of the Surgeon General).
33. Serving Our Children (describing findings of Mental Health: A Report of the Surgeon General).
34. C. Neil Bull et al., Challenges and Solutions to the Provision of Programs and Services to Rural Elders, University of Missouri-Kansas City Center on Aging Studies (1991).
35. HHS Initiative on Rural Communities Task Report (draft October 2001) (hereafter "Rural Communities Task Force Report"). This report indicated that the inadequate provision of certain services, including mental health and substance abuse treatment, account for some of the most stark disparities between rural and urban health and social services.
36. Rural Communities Task Force Report.
37. Overcoming Barriers.
38. Rural Communities Task Force Report.
39. Serving Our Children; see also Health Resources and Services Administration, Achieving Success for All Children with Special Health Care Needs: A 10-Year Action Plan to Accompany Healthy People 2010, U.S. Department of Health and Human Services (2001) (finding that a lack of service coordination impacts negatively on both the quality and effectiveness of treatment for children). Similarly, a report prepared for the Federal Interagency Coordinating Council concerning services for young children with disabilities concluded that current federal program requirements could require communities to respond to five separate needs assessments, requested at different times, all seeking similar information with a slightly different focus. Georgetown University Center for Child Health and Mental Health Policy, Building Integrated and Effective Services in the Community for Young Children and Their Families: Perceived Barriers Within Federal Legislation and Regulations (A Working Draft) (2000).
40. Overcoming Barriers.
41. National Council on Disability, Federal Policy Barriers to Assistive Technology (2000).
42. Andy Schneider et al., Medicaid Eligibility for Individuals with Disabilities, Kaiser Commission on Medicaid and the Uninsured (Undated).
43. Cost-Effectiveness of Home and Community-Based Long-Term Care Services, Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services (1999).
44. HCBS waivers may only be targeted to one of the following target groups or subgroups: aged or disabled or both; mentally retarded or developmentally disabled, or both; or persons with mental illness. 42 C.F.R. Section 441.301(a)(6). In addition, as studies have found, maintaining the linkage between HCBS waiver eligibility and institutional care also prevents states from restricting access to nursing homes by imposing more stringent criteria for admission. See Harrington, et al.
45. Gary Smith et al., Understanding Medicaid Home and Community Services: A Primer, George Washington university Center for Health Policy Research (2000)
46. Overcoming Barriers

Last revised: April 21, 2002