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Policy Reference Desk
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AIMMM POLICY ACTION BRIEFS:
Making Medicaid Programs Comply with the ADA: What Does Reasonable Modification Got To Do with It?
Basic Facts: Medicaid is a Federal-State entitlement program providing health coverage to low income children and families, including people with disabilities of all ages. It is best known as providing basic health care to children and families. But, it is also the largest public funding source for institutional and community long term services in the nation.
Like all other public programs, the ADA requires that a State administer Medicaid in a manner that does not discriminate against individuals with disabilities eligible for the health care and long-term services that the program offers. To do this, a State must take steps to assure that persons with disabilities on Medicaid receive such services in the most integrated setting appropriate to their needs. This is known as the ADA integration mandate.
The Olmstead Decision: In its L.C. v Olmstead decision, the U.S. Supreme Court ruled that the needless and unjustified institutionalization of people with disabilities is discriminatory. The Court said that institutionalizing a person who could live in their community with services and supports is a form of discrimination and segregation banned by the ADA that cuts them off from their community, family and friends.
It further held that the practice violates the requirement in the ADA that services be provided to such individuals in the most integrated setting appropriate to their needs. In order to meet its obligation under ADA, a State must BOTH REMEDY such discrimination when it has occurred AND PREVENT it from taking place in the future. (For more information and Key Resources on the ADA and L.C. v. Olmstead click here)
Planning alone is not sufficient: The Court also said that a State could develop a plan to help guide its efforts to carry out the law's integration requirements. Planning of this type can be useful and most States are involved in some sort of activity of this sort. But, the key requirement of the decision and the ADA itself is not to plan to avoid unnecessary institutionalization at some far off future date. Rather, it requires State to take any reasonable action it can to rectify the discrimination today.
To do this effectively, each State must do two things simultaneously, it must:
- Identify individuals who want to MOVE OUT OF INSTITUTIONS and help them acquire housing and services to live in their communities; and,
- Assist those living in their communities to STAY OUT OF INSTITUTIONS by helping them to access the same types of services and supports.
Making "reasonable modifications" to Medicaid: The Justice Department's Title II ADA rules for State and local governments says that a public agency, such as Medicaid, ADA must make immediate changes or "reasonable modifications" to its programs, policies and practices, whenever necessary, to prevent or remedy discrimination on the basis of disability. The only time such an agency does not have to make a specific modification is when doing so would "" fundamentally alter the nature of the service, program, or activity".
An example of a "fundamental alteration" would be if an agency had to create an entirely new service or incur excessively high new costs to provide a modification. But, the rules stresses that: 1. A "decision that compliance would result in such alteration or burdens must be made by the head of the public entity or his or her designee after considering all resources available for use in the funding and operation of the service, program, or activity and must be accompanied by a written statement of the reasons for reaching that conclusion"; 2. And, that "a public entity shall take any other action that would not result in such an alteration or such burdens but would nevertheless ensure that, to the maximum extent possible, individuals with disabilities receive the benefits or services provided by the public entity." (Click here to read the ADA Title II rules).
Some examples of reasonable modifications: To modify Medicaid needed to rectify the current or impending unjustified institutionalization of one or more individuals with disabilities, a State could be expected to change its policies and practices in many ways. For example, it could be required to increase the number of hours of personal assistance a person could receive if: 1. Doing so is necessary to prevent or remedy the needless institutionalization of the individual; and, 2. It would not create a fundamental alteration for the State to do so. Sometimes States initiate these modifications themselves. Other times a Court may order it to change a particular policy or practice.
The Garcia Case: A federal Court recently ruled that the ADA required the Massachusetts Medicaid personal care program to modify its total ban on not paying one family member to provide personal assistance to a relative. The Medicaid statute says that parents of minors or spouses cannot be paid to provide services to their relative. Some States have been given waivers from having to meet this requirement. Other States like Massachusetts, however, have a far more stringent policy in place saying no relative (i.e., an adult daughter, son, sister, brother, cousin, etc.) can be paid by Medicaid to provide personal assistance to any other family member under any circumstance. The federal Court in Massachusetts said that the State couldn't impose such a rigid policy when it would result in the unjustified institutionalization of an individual with a disability.
Specifically, the Court found that despite repeated attempts by others paid by Medicaid to provide personal care to Palmira Garcia, a 74 year old woman with dementia and psychosis, the only care she would accept and reliably receive was from her daughter. Because Ms. Garcia would be institutionalized if her daughter did not get paid to be her attendant the Court ruled that the Medicaid program must make an exception to its policy of not paying family members in this instance. While the Court let the general policy stand, it said that ADA required the State to waive it where the individual circumstances warrant it. (Click here to read the Garcia v. Warring decision at http://www.healthlaw.org/pubs/2002.Garcia.v.Warring.pdf).
The Money Follows the Person: A third example of how a State can "reasonably modify" policies, procedures and practices to ensure that people with disabilities receive services in their communities rather than institutionalized is by adopting a policy that when a person leaves a nursing home that the Medicaid money for the facility should "follow the person" and be used to pay for their services in their community. As highlighted above, the Texas legislature passed a law to put this simple but vital principle into practice in that State. (Click here to return to Making Sure the Money Follows the Person).
Helen L: In at least one instance a State also has been ordered by a Federal Court of Appeals to "reasonably modify" its way of doing business by instituting a policy of the money following the person. In a case known as Helen L (and then as Idell S.), a 1995 suit that helped set the stage for the Olmstead decision 4 years later, the Court ruled that under the ADA the State of Pennsylvania could not institutionalized someone if it could just as easily shift money originally designated to be spent on nursing homes over to its personal assistance program. (Click here to read the decision at http://ahcuah.home.att.net/federal/didario.htm.)
Deciding when a modification is reasonable: It is impossible to list every possible reasonable modification a Medicaid program might have to make to assure that its policies; procedures and practices do not discriminate against people with disabilities by needlessly institutionalizing them. Rather, each situation must be assessed individually. And, the starting point is to question whether the proposed modifications is in fact necessary and reasonable to assure that one or more individuals with disabilities receive services in their communities rather than be needlessly institutionalized.
Help AIMMM Compile A Lists of Possible Reasonable Modifications to Medicaid: While it is impossible to make an all inclusive list, we believe that it would be useful to people with disabilities of all ages, community living advocates as well as States and the federal government to identify modifications some States are already making to achieve this purpose. And, we're counting on your help in doing so.
Act Now: If you know of a policy, procedure or practice that your State has reasonably modified to make certain that people with disabilities are not needlessly institutionalized we would like to hear about it. We'd also be interested in receiving any suggestions or questions you might have regarding whether a particular change in Medicaid policies, procedures and practices could be consider a reasonable modification under ADA. Please e-mail us at directors@aimmm.org. We'll post whatever information we obtain on this topic on our Web site at www.aimmm.org. Once we post some examples of possible reasonable modifications States can make in this regard we urge you to use them as illustrations of what your Medicaid might do as well. Thanks.
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What You Need to Know about the Medicaid Home Health Benefit and the ADA
Basic Facts: Medicaid provides States with 3 major ways to offer community attendant services and other needed community living supports to such persons through the mandatory home health benefit, the personal care option and home and community based services waivers. Some States also what is the "rehabilitation Medicaid State option" to provide services and supports to people with psychiatric disabilities as an alternative to institutionalization. (Click here to go to links to a primer on Medicaid community living services.)The following explains what each State must do in regard to the first and probably least well understood of these, the mandatory Medicaid home health benefit.
Medicaid mandatory home health services: Under Medicaid, States are MANDATED to provide 2 types of long term services to anyone who both qualifies for Medicaid and meets additional "level of care" criteria set by the State. The first and most well known of these is, of course, nursing home services. The State is also obligated to provide home health services to anyone who is entitled to nursing home care (See Section 1902(a)(13) of the Social Security Act that requires States to provide home health as a mandatory Medicaid services at http://www.access.gpo.gov/nara/cfr/cfrhtml_00/Title_42/42cfr440_00.html.)
In fact, when Congress added home health services as a mandatory benefit to Medicaid in 1967, its intent was to assure "the availability of both nursing home and alternative noninstitutional services". 30 years prior to the Olmstead decision, Congress enacted this benefit "to encourage the use (of home health services) whenever (a person on Medicaid is) professionally determined to be appropriate (for) noninstitutional services". Home health services, therefore, were clearly meant to provide an alternative to unnecessary institutionalization whenever necessary and appropriate. Most States, however, have never administered this benefit in this way. (Click here to read a legislative history of why Congress created home health services in Medicaid.)
Variability in how States provide Medicaid home health services: Home health services can be overmedicalized and extremely costly. For these reasons, most States make limited use of them and many people with disabilities find what services are provided to restrict their ability to live life to the fullest. But, some States such as Colorado, Delaware and New York make extensive use of Medicaid home health services to provide people with disabilities the daily assistance many need to live in the community. Hence, this proves that when necessary States can and are using the mandatory benefit in a cost efficient manner to help avoid needless institutionalization. (Click here to read a discussion of how Colorado administers its mandatory home health benefit, see Chapters 1 and 2 as well as Appendix II in HHS' Primer on home and community based services at http://aspe.hhs.gov/daltcp/reports/primer.htm)
Opting to offer an equally effective alternative: States have a variety of ways to provide services under Medicaid that can offer an alternative to institutionalization. A State, therefore, does not necessarily have to use the mandatory home health benefit to fulfill its obligation under ADA to provide such an alternative. But, under the ADA such a State must provide another equally effective alternative to institutionalization through some other Medicaid or State only funded program. (Click here to read the Justice Department's ADA Title II rules, including those pertaining to "reasonable modifications" at http://www.usdoj.gov/crt/ada/reg2.html.)
What to do about Intransigent States that Still Segregate and Needlessly Institutionalize Americans with Disabilities: Some States are providing an alternative to unjustified institutionalization by providing attendant and other community based services through the Medicaid home health benefit, the personal care option and/or a home and community based services waiver. But, there are several States that continue to refuse to provide any real alternative to unnecessary institutionalization whatsoever. In fact, 12 States or nearly a quarter of all the States still spend about 80 percent or more of their Medicaid long-term services dollars on institutions rather than community living services. (Click here to see how much of Medicaid funding your State is spending on institutional and community living services.)
States should not be allowed to shirk their responsibility under the ADA and the Medicaid statute itself to provide people with disabilities a real alternative to being in a nursing home or another institution. And, this particularly should be made to apply to States that make little to no real effort to offer such an alternative to people with disabilities today. We believe that these States should be made to use the mandatory Medicaid home health benefit to accomplish the very purpose it was first enacted to achieve a generation ago.
Why the home health mandate matters: The mandatory nature of the benefit is important for at least three key reasons:
- The home health mandate underscores that people with disabilities have a right under both the ADA and the Medicaid statute to receive services in their own homes and communities.
- When a State fails to offer any other alternative, it must use the Medicaid home health benefit to provide an effective failsafe against needless institutionalization.
- State and federal officials likely will be extremely wary about the costs associated with providing Medicaid home health services to all who need them. To address these issues, they should sit down with the disability community to agree on more cost efficient ways to meet the same vital aims.
HCFA based this directive on the Skubel case brought in Connecticut. The Court said that - unlike Medicare - Congress never put a homebound restriction in the Medicaid statute and that a State's attempt to impose such a restriction would violate the ADA's the most integrated setting requirements.
In Skubel, the Federal Second Circuit Court also ruled another part of HCFA's Medicaid home health rules invalid. It said that contrary to these rules, Medicaid home health services could be provided in community settings other than the person's own home. To control for the costs of expanding services in this way, the Court also held that a person could receive home health services in their communities only to the extent that they would be receiving the same hours of services in their homes. This part of the Skubel decision is currently only applicable in the 3 States of the Second Circuit -- Connecticut, New York and Vermont.
This is because the July, 2001 State Medicaid Directors' letter did not deal with the second part of the decision. Moreover, HHS has never made any attempt to change that part of the federal Medicaid rules that says home health services are to provided at the eligible person's "place of residence". . (Click here to read the definition of Medicaid home health services in the rules at Section 440.70 on page 200 of 42 C.F.R 440 at http://frwebgate3.access.gpo.gov/cgi-bin/waisgate.cgi?WAISdocID=35065728378+28+0+0&WAISaction=retrieve. )
Next steps: AIMMM believes that both the Medicaid statute and the ADA require that mandatory Medicaid home health services must be offered as a real alternative to nursing home care to those who qualify and want to avoid unnecessary institutionalization. We, therefore, will be calling on the Bush Administration and State Governors must take immediate steps to ensure that mandatory Medicaid home health services are provided in a manner consistent with both laws. We urge you to join with us in doing so.
Tough economic times make it imperative: Due to growing budget deficits, States are cutting funding for all Medicaid services. And, funding for community living services offered through the Medicaid personal care option, rehabilitation option or a waiver is likely to become increasingly vulnerable. This is because each State has complete discretion to decide when to expand or drastically cut such services or whether to offer them at all.
Medicaid home health services certainly are not immune from these reductions. But, by law each State must ensure that mandatory home health services are provided on a uniform statewide basis to anyone on Medicaid who otherwise would be in a nursing home. In the past, the Secretary of HHS and most Governors have failed to implement or comply with this critical provision of the law.
States face extremely difficult policy and budgetary choices over the coming 3 or 4 years in respect to their Medicaid programs. And, we need to do our part in offering up responsible and cost efficient ways to help meet this challenge. But we must not let the Bush Administration or Governors renege on their obligation to use mandatory Medicaid home health services to get or keep people with disabilities of all ages out of nursing homes whenever no other alternative to do so exist. This should be especially true with regard to States that in the name of States' rights needlessly segregate, isolate and institutionalize young people with disabilities. (Click here to read Nick's Crusade: One Young Man's Fight to Live Out the Promise of the ADA).
8 Key Principles for Making Certain that Medicaid Home Health Services Help People with Disabilities of All Ages Live in the Community: The mandatory Medicaid home health services must as a matter of law be made available whenever necessary to enable people with disabilities on Medicaid avoid unjustified institutionalization. To comply with this basic requirement, AIMMM believes that Governors and State Medicaid Directors must be called upon to administer the home health benefit and other services in a manner that is consistent with the following major principles:
- Mandatory Medicaid home health services must be offered as an alternative to institutional care for anyone on Medicaid who meets the nursing home level of care it sets.
- Mandatory Medicaid home health services must be made available to both those who need it to avoid unnecessary institutionalization on a post-acute care or an ongoing basis.
- A State also can provide persons an alternative to unjustified institutionalization through the personal care or rehabilitation option, a waiver or a combination of these services.
- A State that does this, however, must ensure that either these alternative services or the mandatory home health services are made available to all those that who require them to avoid unjustified institutionalization in the State.
- A State must set only those reasonable limits on the amount, duration and scope of this benefit consistent with its purpose, i.e., to prevent or remedy unjustified institutionalization.
- A State must not impose a homebound requirement on Medicaid home benefit.
- A State is not required to provide Medicaid home health services, as an alternative to institutionalization when doing so would result in a fundamental alteration under the ADA.
- The ADA, however, requires each State to make all other reasonable modifications to the Medicaid program, including the home health benefit, necessary to ensure that people with disabilities receive services in the most integrated setting appropriate to their needs.
Use these principles to evaluate whether your State Medicaid home health meets the requirements of the Medicaid statute and the ADA.
The Need for Federal Action: The Bush Administration also has a crucial role and responsibility to carry out in making certain that all States provide Medicaid home health services and other services as a real alternative to institutionalization. Toward this end, President Bush should direct the Secretary Thompson to immediately prepare and publish an Interim Final Rule requiring all States to administer the Medicaid home health benefit and other related services consistent with the Skubel decision and the 8 points listed above
Current Medicaid regulations state that home health services can only be provided in the person's home. Imposing this restriction conflicts with the civil rights of people with disabilities to receive services in the most integrated settings appropriate to their needs. HHS should remove this regulatory restriction immediately.
Act Now: To learn more and to become involved in working to make sure that the Medicaid mandatory home health benefit is offered as a real alternative to institutional care for all those who qualify for them take the following steps:
Get the facts—Call or write your Governor and/or State Medicaid Director ask to tell you what requirements and service limitations the State imposes on the mandatory home health benefit.
Share the 8 Key Principle for assuring the Medicaid home health benefit is administered consistently with the ADA—Ask what steps, if any, the State Medicaid program is taking to ensure that Medicaid home health services are provided to anyone who qualifies and needs them to move out or stay from going into a nursing home (including an ICF-MR) as required by the ADA and the Medicaid statute itself. For the address and phone number of your Governor, click on http://www.nga.org/governors/1,1169,,00.html. For similar information on your State Medicaid Director, click on http://medicaid.aphsa.org/members.htm.
Let us know what you learn—We are interested in both learning what you find out from your Medicaid Director as well as working with disability and aging advocates who want to work to improve Medicaid home health coverage in their State. Please e-mail us at directors@aimmm.org. We'll post whatever we receive on our Web site. We also will compile an online summary of what we receive that can be used to help inform the policy debate on this issue. And, tell us how we can be of more help to you.
Start making a difference—To sign up to receive updates on what you can do to help on this and other issues like it, please e mail us at directors@aimmm.org. Thanks.
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Policy Analysis
A Legislative History of 42 U.S.C. § 1396(a)(10)(D): Home Health Services as an Alternative to Nursing Home Care
By Stephen F. Gold, Esq. and Jennifer Chang- Background
- Senate Bill 1661
- Amendment 294
- The Report of the Senate Finance Committee
- Conference Committee Report
- Conclusion
The language tying eligibility for home health services to nursing facility services made its first appearance in the Social Security Amendments of 1967, Pub. L. No. 90-248, 81 Stat. 902 (1968), which amended section 1902(a)(13) of the Social Security Act to require that states provide "for the inclusion of home health services for any individual who, under the State plan, is entitled to skilled nursing home services."
The language in question was added to the proposed legislation by the Senate Committee on Finance during the second half of 1967. The version of the bill passed by the House of Representatives, H.R. 12080, did not contain the language in question or any similar provision. See H.R. 12080, 90th Cong. (1967).
The provision identifying home health care services as an alternative to nursing home care originated in a bill introduced on the Senate floor on May 2, 1967, by Senator Frank E. Moss (D-Utah), chairman of the Long Term Care Subcommittee of the Senate Special Committee on Aging. The text of the bill, S. 1661, identifies as its goal in part "[t]o amend title XIX of the Social Security Act to assist in assuring the availability of both nursing home and alternative noninstitutional services for recipients of assistance there under, [and] to encourage the use whenever professionally determined to be appropriate of noninstitutional services . . . ." S. 1661, 90th Cong. (1967).
S. 1661 required that states that provide nursing care services also provide home health services. S. 1661, 90th Cong. § 3(a)(1). The bill also required regular medical review of the care provided to particular recipients in nursing homes, and review of "the necessity and desirability of the continued placement of such patients in such nursing homes and the feasibility of meeting their health care needs through alternative noninstitutional services." S. 1661, 90th Cong. § 3(a)(2).
In his summary of S. 1661, Senator Moss stated that "[p]ayment for home health services would be required where such services are available and prescribed. Where home health services are available and can meet a patient's needs it should be possible to use them as an alternative to confinement in a nursing home." 113 Cong. Rec. 11,418 (1967).
In his remarks introducing S. 1661 on the Senate floor, Senator Moss explained:
Federal medical assistance programs have been criticized, and I think with some justice, for emphasizing institutional services to the extent that a bias is produced tending to promote the institutional confinement of public assistance clientele. Sometimes needed services can be provided and paid for only if the person is placed in a nursing home. This is an unfortunate bias both from the point of view of the medical care and economics. In my bill, States will be called upon to include payment for home health services where such services are available and deemed by the patient's physician to meet his needs.
The Subcommittee on Long-Term Care . . . has heard considerable testimony to the effect that many patients are being sent to nursing homes who need not be sent there, while many others could have their nursing home stays shortened, if home health services were available. . . .The inclusion of these services in public assistance medical care . . . will provide an alternative wherever these services become available to institutional care for patients who are still able to live independently.
The bill also would call upon States to assure a periodic review by medical and other appropriate professional personnel of the utilization of nursing home care by public assistance patients. . . . [Currently t]here is no evaluation of potential for rehabilitation and discharge and no program of care directed to that end. Months and years pass without thorough revaluation of a patient's condition to determine if the services of the home are still appropriate and needed. 113 Cong. Rec. 11,416-17 (1967).
On August 28, 1967, Senator Moss re-introduced S. 1661 as Amendment 294, stating that the amendment "is substantially the same as my bill S. 1661." 113 Cong. Rec. 24,306-07 (1967). Senator Moss' Amendment 294 was then referred for consideration to the Senate Committee on Finance, which held hearings on the Social Security Amendments through the end of September.
On August 31, Senator Moss testified directly before the Senate Finance Committee about the provisions and purposes of Amendment 294. As he explained,
The first major provision of my amendment would require that State plans under title XIX which provide nursing home care also provide home health services. . . . My amendment would alter [the] language to require that State[s] offering service numbered 4 in the act, nursing home services, must also offer the service numbered 7, home health services.
My subcommittee has heard considerable testimony to the effect that there are many patients in nursing homes who do not need to be there, and many patients are now being sent to nursing homes who need services which could be as well provided in their homes if home health services were available.
. . . Our subcommittee has heard estimates that as many as one-third of these patients do not really require continuous skilled nursing home service. Many of them are there because they need services which can be provided and paid for by public assistance programs only if they are admitted to nursing homes since no other mechanism is available for payment. This is bad economically and bad for the patient. My amendment . . . would provide one major alternative to institutionalization for patients with minimal needs.
My amendment also adds to the State plan requirements provision for a periodic medical review of the utilization of nursing home care by public assistance patients. Too often patients entering nursing homes are simply left there for the rest of their days. Months and years pass without reevaluation of a patient's condition to determine if the services of the home are adequate to the patient's needs, or if they are still appropriate and needed.
Social Security Amendments of 1967: Hearings Before the Committee on Finance, United States Senate, on H.R. 12080, 90th Cong. 894 (1967). Senator Moss' remarks before the Finance Committee, consistent with his comments on S. 1661, demonstrate clearly that his amendment was intended to establish home health service as a true alternative to nursing home care, in order to ensure that individuals are not needlessly kept in nursing homes when they may be able to live independently. In addition to increasing the availability of home health care services by requiring their provision by states that provide nursing home care, the proposal also sought to establish a system of medical review that would affirmatively help to move individuals out of institutions when appropriate.
After holding several weeks of hearings, the Senate Finance Committee ultimately adopted the approach of Senator Moss and Amendment 294. The committee report reads in relevant part:
The amendment provides . . . for the States to have in operation a professional medical review program under which periodic evaluations of the care provided title XIX patients in nursing homes and mental hospitals are made. Such regular independent review made by or on behalf of the State agency will provide a mechanism for assuring that patients are receiving appropriate care in an appropriate setting. To the extent possible, it is intended to develop active care designed to enhance the capacity of patients to care for themselves--frequently, in a lower cost facility or setting. To the extent this is achieved, Federal, State, and local costs will be reduced. So as to provide a lower cost alternative to institutional care, States will also be expected to have home health care services available, effective July 1, 1970, for those persons eligible for skilled nursing home care. S. Rep. No. 90-744, at 190 (1967).
In a section describing the changes with regard to the expanded provision of intermediate care, the report notes that the "American Nursing Home Association and the Department of Health, Education, and Welfare both advised the committee that as many as 50 percent of the assistance recipients in skilled nursing homes are not, in fact, in need of skilled nursing home care." S. Rep. No. 90-744, at 189. Thus, the report demonstrates that in adopting the new provisions on home health care services and medical review, the Senate Finance Committee was well aware of the problem of the unnecessary segregation of individuals with disabilities into nursing homes. Further, the report also indicates that one of the Committee's main purposes in adopting the changes in question was to encourage independent living or the "capacity of patients to care for themselves," by establishing home health care as an alternative to nursing home care. By requiring States that provide nursing home care to provide home health services as well and providing a system of review to ensure that public assistance recipients are not needlessly institutionalized, the changes adopted by the Senate Finance Committee reflect an intention to ensure that public assistance recipients have access to a meaningful alternative to institutional care.
The changes discussed above adopted by the Senate Finance Committee survived the conference with the Ways & Means Committee of the House of Representatives and were enacted as part of Public Law 90-248. In the language of the act ultimately enacted by Congress, states would be required to provide "for the inclusion of home health services for any individual who, under the State plan, is entitled to skilled nursing home services." Pub. L. No. 90-248, 81 Stat. 902. In addition, the law provided for a regular review, "with respect to each of the patients receiving such [nursing] care, . . . [of] the necessity and desirability of the continued placement of such patients in such nursing homes (or institutions), and [] the feasibility of meeting their health care needs through alternative institutional or noninstitutional services." Pub. L. No. 90-248, 81 Stat. 906.
The joint committee report summarizes briefly that under the amendments, states will be required to review "the appropriateness of care provided title XIX patients in nursing homes, mental hospitals, and other institutions," and that states "which provide skilled nursing home care under Medicaid will also be expected to provide home health care." Senate Committee on Finance & House Committee on Ways & Means, Summary of Social Security Amendments of 1967 (Joint Publication), S. Rep. No. 90-1402, at 22 (1967).
The foregoing review of the legislative history of 42 U.S.C. §1396(a)(13)(D) demonstrates that members of Congress were very much aware that a large proportion of public assistance recipients living in institutions could live on their own, with the help of home health services. In requiring states that provide nursing home care to provide for home health services as well, Congress intended to expand the availability of home health services, put an end to the unnecessary institutionalization of people with disabilities, and enhance the capacity of people with disabilities to live independently.
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Key Resources on the ADA and L.C. v. Olmstead
Federal Sites:The Americans with Disabilities Act (ADA) statute: http://www.usdoj.gov/crt/ada/pubs/ada.txt.
The U.S. Justice Department's regulations for Title II of the ADA: http://www.usdoj.gov/crt/ada/reg3a.html.
The U.S. Supreme Court's majority and minority opinions in L.C. v. Olmstead: http://supct.law.cornell.edu/supct/html/98-536.ZO.html.
HHS Fact Sheet on the Olmstead decision: http://www.cms.hhs.gov/media/press/release.asp?Counter=369.
January, 2000 Letter from HHS Secretary Shalala to the Nation's Governors on the Olmstead decision: http://www.cms.hhs.gov/states/letters/smd1140b.asp.
Guidance Letters to State Medicaid Directors on the Olmstead decision: http://www.cms.hhs.gov/olmstead/smdltrs.asp.
Express A Olmstead Related Policy Concern or File a Complaint @:
E mail address for expressing "any questions or concerns about ADA/Olmstead and its requirements or if you need clarification to HHS' responses" to the Department's ADA/Olmstead Team: ada/olmstead@cms.hhs.gov.
HHS Office of Civil Rights Fact Sheet on how to file a complaint: http://www.arcil.com/tilpatch/ocrcompl.doc.
Form for filing a complaint with the HHS Office of Civil Rights regarding discrimination (including unjustified institutionalization) against an individual with a disability: http://www.hhs.gov/ocr/disform.html.
More Federal Resources @:
HHS Primer on home and community based service - explains how Medicaid can be used to provide services to people with disabilities in the most integrated setting appropriate to their needs: http://aspe.hhs.gov/daltcp/reports/primer.htm.
Information on the Real State System Change grants that help States improve their Medicaid community living services and thus comply with the integration requirements of the ADA and the Olmstead decision: http://www.cms.hhs.gov/realchoice/.
A list of State contacts responsible for implementing the Real Choice grants: http://www.cms.hhs.gov/realchoice/grntreps.pd.
Technical assistance @:
The HCBS Resource Network is funded by HHS to provide technical assistance, coordination and other support that brings together the federal government, states, and persons with all types of disabilities of all ages to expand access to high quality, cost-effective, consumer-directed home and community-based services and supports: http://www.hcbs.org/index.htm.
State Government Sites related to the Olmstead decision:
HHS Office of Civil Rights' list of State Web sites related to the Olmstead decision: http://www.hhs.gov/ocr/olmstates.htm.
The National Association of State Legislatures has a wide variety of reports and resources on Olmstead and ways States can improve their Medicaid community living services: http://www.ncsl.org/programs/health/longcare.htm.
Non Government Sites:
The National Association of Protection and Advocacy Systems' (NAPAS) Web Page on the ADA, Medicaid and legal resources for ensuring people with disabilities can live in their own homes and communities rather be wrongfully institutionalized: http://www.napas.org/I-3/I-3-d/home.htm.
NAPAS Progress Reports on States' efforts to comply with the ADA and the Olmstead decision: http://www.napas.org/I-3/I-3-d/Olmstead%20Progress%20Reports.htm.
The Bazelon Center on Mental Health Law's publication, Prohibiting Discrimination in the Provision of Public Benefits and Services - Title II of the Americans with Disabilities Act: http://www.webcom.com/bazelon/ADATITL2.HTM.
Please e mail us at directors@aimmm.org if you have a problem using any of these links or would like to recommend other ones that we should consider adding. Thanks.
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Why Bush Administration's Action Fails to Ease the Medicare Homebound Rule:
Introduction: The Medicare home health homebound rule is being used to imprison thousands of people with permanent disabilities and serious health conditions in their home each day. At a July 26th event commemorating the 12th anniversary of the ADA President Bush announced that his Administration issued guidance that day to "clarifying Medicare policy, so people who are considered homebound can occasionally take part in their communities, without fear of losing their benefits." The President stressed that the intent behind it is to ensure that "when Americans with disabilities participate in their communities, they should not be penalized." Unfortunately, the new program instruction to home health agencies and Medicare carriers is even more restrictive than the already overly restrictive homebound definition in the statute.
Current law: In order to receive Medicare home health services, a beneficiary must have a post acute or chronic skilled care need and must be "homebound". To be considered "homebound": 1. The individual must have "a normal inability to leave home"; 2. "leaving home requires a considerable and taxing effort by the individual," e.g., by relying on a wheelchair or cane or the assistance of another person; and, 3. trips outside the home must be of an "infrequent or of relatively short duration". The exception to this is that the law permits an individual to be absent from their home to receive health care or to attend adult day care or religious services at anytime The law likewise states that: "Any other absence of an individual from the home shall not so disqualify an individual if the absence is of infrequent or of relatively short duration." [42 U.S.C. '1395n(a)(2)(F)] . In recent years, however, individuals with severe and permanent disabilities like ALS, muscular dystrophy, severe brain injury and quadriplegia are increasingly being thrown off the benefit for leaving home regardless of how short or infrequently they do so.
New Program Instruction on Homebound: In attempting to address this problem, CMS' new guidance cites examples of when "chronically disabled individuals who otherwise qualify as homebound should not lose home health services because they leave their homes infrequently for short periods of time for special occasions, such as family reunions, graduations or funerals." CMS points out that its list of excused absences is meant to be illustrative rather than all-inclusive. Listing examples like these, though, creates more problems than it solves. The Medicare program should not be in the business of creating what will always be a finite list of "permissible reasons" any beneficiary can choose to leave their home that ultimately likely will be used to unjustly deny them their services and/or their personal freedom.
Even under current law, a beneficiary theoretically should be able to leave home to work, attend college, shop, go to the theater, and dine at a restaurant and a myriad of other reasons if such "absences" are of "infrequent or relatively short duration". But, there is the rub. No one knows what the phrase "absences of infrequent or relatively short duration" means and any attempt to define it would be as arbitrary and capricious as developing a list of government approved reasons why law abiding Americans should be "allowed" to leave home and still retain the skilled home health services they need to literally stay alive.
Next Steps: Congress and the Bush Administration should work together to enact legislation this year to ensure that Medicare beneficiaries with permanent and severe disabilities who require skilled home health services can leave their homes for any reason and length of time without having to fear of being thrown off the services.
The rationale for this is simple: When enacted about 30 years ago, the homebound rule was a good proxy for deciding who needed the benefit and, in most cases, this remains true today. This is because the vast majority of the estimated 2.5 million Medicare beneficiaries who receive home health services do so only for a short time while they recover from surgery or an acute illness. For these individuals remaining at home is likely medically necessary. Thus, in these instances the homebound rule may makes sense and be a minor inconvenience.
But, the homebound rule is an unfair and unnecessary life sentence for those with serious health conditions like ALS, late stage MS and some severe spinal cord injuries who must receive home health services for the rest of their lives. Nationally, roughly 46 thousand beneficiaries are estimated to need skilled home health care for a year or more due to the on going and serious nature of their illness or disability. This skilled nursing care in the home typically includes a tracheotomy, catheter, feeding tube and/or ventilator. Such individuals also usually receive a couple of hours of help each day from a home health aide with essential tasks like bathing, eating, dressing. Particularly at this time in our history, Medicare has neither right nor need to force to these Americans to forfeit all of their other freedoms in return.
Bob Williams and Henry Claypool, Co Directors
Advancing Independence: Modernizing Medicare and Medicaid
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