Nursing home reimbusement steady despite other state cuts

Dec. 16, 2003 — Despite cuts in in-home services such as those proposed in California, nursing home reimbursement rates have remained steady in most cases, according to a report by the General Accounting Office. Of the states studied for its report, “only Illinois, Massachusetts, Michigan, and Texas cut the per diem rates paid to all nursing homes” during fiscal years 1998 through 2004. “In over three-quarters of these states, nursing home per diem rates grew, on average, by an amount that exceeded the skilled nursing facility market basket index, the index used by the Centers for Medicare & Medicaid Services to measure changes in the price of nursing home goods and services for Medicare.”

The GAO report notes that “almost half of all Americans over the age of 65 will rely on nursing home care at some point in their lives, and two in three nursing home residents have their care covered at least in part by Medicaid. Under Medicaid, states set nursing home payment rates and the federal government reimburses a share of state spending,” says the GAO report.

“According to the most recently available data, Medicaid nursing home expenditures exceed $43 billion, and total Medicaid spending for fiscal year 2003 is expected to double by 2012,” says the report.

For the report, GAO interviewed state and nursing home industry officials in 19 states and obtained documentation about nursing home payment rates and methods, including state methods to determine nursing home per diem rates for fiscal years 1998 through 2004. “Although each of the 19 states experienced recent fiscal pressure, states’ nursing home payment rates have remained largely unaffected,” reported GAO.

Read report at http://www.gao.gov/atext/d04143.txt

RELATED RESOURCES:

• Department of Health and Human Services, Centers for Medicare and Medicaid Services: Medicare Program; Revisions to Payment Polices Under the Physician Fee Schedule for Calendar Year 2004. GAO-04-266R, November 19, 2003 (4 pages).
• National Council on Disability analysis of federal and state implementation of the Supreme Court’s Olmsteaddecision.

Safety and Personal Assistance Services

A large 1999 study in California found that there is no higher incidence of abuse or safety problems when people are in charge of their own services.

The study, said the researchers, “should lay to rest the notion that the consumer-directed model ofservice provision ” should be restricted.

Researchers A.E. Benjamin, R.E. Matthias, and T.M. Franke found that “when consumer input is used in programming, the quality of services is improved, and there is often an increase in health, safety, well being, and satisfaction for all consumers.”

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From the study:
Advocates for the elderly, including the organizations which make up the “aging network” have long favored formally organized professional supervision and accountability under the aegis of government-regulated home care agencies. . . . Professional home care agencies and their trade associations, not surprisingly, assert the superiority of the “professionally managed” model. Trade unions representing or seeking to organize home care aides express concern that states may choose to implement consumer direction in ways that go counter to workers’ interests.

Critics of consumer-directed models of service delivery have expressed concerns about client safety under this model and have generally taken the view that consumerdirection should be restricted to a minority of clients (primarily younger adults) who social workers judge to be capable of hiring, firing and giving direction to their workers. This study provides no evidence in support of restricting availability of the consumer-directed model. . . .

When consumers were asked whether they had ever thought that their provider was responsible for money or other items disappearing from their homes, 89.1 percent of people who received services from “professionally-managed” agencies said “never” as compared to 93.5 percent of the people who hired their own workers–a statistically significant difference favoring the “consumer-directed model.” Although instances of abuse, neglect, and mistreatment were occasionally reported, said the reserachers, “consumers in the consumer-directed model reported such occurrences either less frequently — or no more frequently — than consumers in the professional management model.”

We believe that the results of this study with respect to client safety measures should lay to rest the notion that the consumer-directed model of service provision is best restricted to a minority of exceptional, “high-functioning” elderly and disabled individuals, whom professionals have assessed and found to be capable of managing their own services. In California, the overwhelming majority of elderly and disabled IHSS clients receive services through the consumer-directed model, with few untoward results. Although instances of abuse, neglect, and mistreatment were occasionally reported, consumers in the consumer-directed model reported such occurrences either less frequently or no more frequently than consumers in the professional management model. . . .

Client Safety

The client safety area has two dimensions–client-perceived physical and psychological risk and client sense of security. The “perceived risk” dimension summarizes client reports of having experienced abusive, frightening, or harmful behaviors by their providers (i.e, yelling, threatening, possible stealing, pushing or shoving, neglect, injury, alcohol use, unwanted sexual advances). The “sense of security” measure reflects client’s feelings of being safe or unsafe with their aides and their perceptions of how well they get along with their aides. Neither of these safety measures was significantly influenced by service model type.

That model type does not predict client safety is an important finding because proponents of the PMM argue that clients are safer under this model of service delivery.Indeed, the presumed superiority of professional management in safeguarding client safety is so taken-forgranted that even some advocates of client direction believe that a CDM requires clients to make trade-offs between independence and risk and often base their advocacy of the CDM on a defense of clients’ “right to risk.” However, at least in California’s IHSS, the client-reported incidence of abuse, neglect, and mistreatment is equally low in both service delivery models. Within the CDM, however, type of worker is a significant predictor of clients’ sense of security with clients who have family providers experiencing a significantly greater sense of security.

Several non-model factors emerged as significant predictors of client reports of having experienced various forms of provider abuse. Clients who needed less paramedical help, those who had fewer workers in the past year, those who were more confident of backup help from family and friends, and those who used fewer formal services (other than IHSS) reported fewer incidents. Paradoxically, clients who said that they did not have someone to turn to for advice also reported fewer incidents of provider abuse. These findings suggest that, as might be expected, clients with the highest level of dependency are most at risk for provider abuse, regardless of which service model they are in. On the other hand, greater access to and reliance on informal as opposed to formal supports appear to protect clients from incidents of provider abuse. The one predictor that is counter-intuitive and difficult to interpret is that not having anyone to turn to for advice is associated with fewer reported incidents of provider abuse. It may be that some clients who are able to remain in the community despite lack of informal supports are unusually self-reliant and capable of looking after their own safety–but these are only hypotheses that would require testing in further research.

With respect to sense of security, clients who felt significantly more secure were more likely to be White (rather than Latino or Asian), believe they were not receiving enough IHSS service hours, live alone, are more confident of having backup help, have known their workers before hiring them, and have no language problems with their workers. Several of these relationships suggest that ease of communication with the worker and trust in the worker based on a prior relationship positively influence clients’ sense of safety.

That those who live alone should feel more secure seems more surprising because other findings generally point to the importance of informal supports in making it less likely that clients will actually experience threats to their safety. Perhaps those who live alone are a self-selected group who are unusually self-reliant and “fiercely independent.” In other words, clients who live alone may feel more secure because they are more comfortable taking risks and are more confident in their own abilities to take care of themselves. Alternatively, those who live alone may perceive themselves to be more dependent on their workers, choose their workers more carefully, and, for that reason, feel safer with workers whom they trust. More research is necessary to understand the dynamics at work here. The issue is of interest because the disability rights movement has tended to equate independence and autonomy with being able to live alone and not relying on informal supports.

Client Empowerment

The client empowerment outcome area has three measurement dimensions within it: service choice and satisfaction, preferred role, and client assertiveness. “Service choice and satisfaction” measures client satisfaction with the amount of choice they had in four service areas (which provider, which tasks, how tasks were done, and when they were done) and the amount of choice clients had, particularly with respect to which tasks are done and how tasks are done. “Preferred role” measures client preferences for training and supervising their own workers. “Client assertiveness” reflects clients’ desire to have a major say and feeling comfortable giving directions.

Service model is a strong predictor on two of these measurement dimensions: service choice and satisfaction and preferred role. Clients in the CDM as compared to the PMM and, within the CDM clients with family as compared to non-family providers, reported significantly more satisfaction with respect to amount of choice as well as more actual choice and greater preference for taking charge of training and supervision.

It is particularly striking, for example, that, in this study, the professional management model was not found to have better outcomes with respect to client safety. The professional management model has long been regarded by both its own advocates and advocates of consumer-direction as the “safer” approach. Indeed, advocates of consumer direction typically argue for their approach by defending consumers’ “right to risk.” In view of the widespread belief that the professional management model is the approach that minimizes client risk–albeit at the expense of restricting consumer choice and control–it was unexpected and surprising that the study provided so little evidence in support of this conventional wisdom. Indeed, in the bivariate analyses, with respect to reported instances of neglect and suspected theft by providers, consumers in the consumer-directed model reported significantly fewer negative experiences. . . .

About the study

California’s In-Home Supportive Services (IHSS) Program was chosen as the locus of the study primarily because the program serves a large number of clients (approximately 200,000 at any point in time) and also serves a broad range of clients in terms of age, severity of disability, and the nature of the diseases or conditions responsible for their functional disabilities. . . .

The research design called for sampling by dividing (stratifying) the population into different groups and then selecting a certain number of cases at random from each group for the study sample. Stratifying in this way increases the precision of the estimates. The target sample for this study was first divided into the two service delivery models. Within each, the target sample was further divided by age (over and under 65) and severity of impairment (severe and not severe). The plan called for a sub-sample of 500 clients to be randomly selected (within stratum) for each service delivery model, yielding a total client target sample of 1,000. The plan for the worker target sample, totaling 500, was to select a sub-sample of 250 for each model from the pool of workers serving the clients in the study sample. . . .

From A.E. Benjamin, R.E. Matthias, and T.M. Franke, Comparing Client-Directed and Agency Models for Providing Supportive Services at Home,report for the Assistant Secretary for Planning and Evaluation, HHS (April, 1999)

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OTHER ITEMS OF INTEREST:
The following sites contain information that may be of interest. Please bear in mind that the information at these sites is not controlled by the Center for An Accessible society. Links to these sites do not imply that the Center supports either the organizations or the views presented.

Freedom Clearinghouse, a grassroots website designed to help disability activists enforce the Olmstead decision in statesConsumer Choice and Control:
Personal Attendant Services and Supports in
America: Report of the National Blue Ribbon Panel on
Personal Assistance Services, August, 1999

Directory of Publicly Funded Personal Assistance Programs from the World Institute on Disability

“Understanding Medicaid Home and Community-Based Services: A Primer” — from the U.S. Dept. of Health and Human Services, available athttp://www.aspe.hhs.gov/daltcp/reports/primer.htm

Information on Home & Community-Based, Consumer-Directed, and Personal Assistance Services from the Office of Disability, Aging and Long-Term Care Policy at the U.S. Dept of Health and Human Services

How States’ “Nurse Practice” Acts work against consumer direction — from the January, 1999 Ragged Edge magazine

The “Institutional Bias” in Long-Term Care Policy

“Government policies and funding should not perpetuate the forced segregation, isolation, or institutionalization of people with disabilities of any age,” said delegates to a 1999 conference on “Personal Assistance Services in the New Millennium,” hosted by the World Institute on Disability in July, 1999. “No one should have to live in a nursing home,” said Clinton adminisration Secretary of Health and Human Services Donna Shalala.

In the past, disability was regarded as a medical condition that prevented people from participating in most activities of daily life. Many people with disabilities were segregated and isolated from society, housed in large institutions without consideration of appropriate, less restrictive, alternatives.

In 1965, Medicare and Medicaid legislation was passed that provided strong financial incentives to provide long term care in nursing homes. “Medicare and Medicaid legislation came to guarantee public payment for institutional services. Nursing home care in the United States is an entitlement — any person who is eligible for nursing home services cannot be denied that service if there is a nursing home bed available,” says theRobert Wood Johnson Blue Ribbon Panel on Personal Assistance Services.” “Personal assistance services delivered in the community does not have such entitlement status. There is still a strong institutional bias in federal and state policies which provide funding for long-term services.”

More from the Blue Ribbon Panel:
The financial eligibility criteria for receiving personal care services in the community should not be more stringent than the financial eligibility criteria for institutional placement. Medicaid and SSI asset and income limits for persons receiving long-term services in the community should be changed to allow individuals the greatest opportunity to remain in the community and not be forced into an institution. For example, recipients of home- and community-based services could be allowed to retain the equivalent of 6 to 12 months of expenses, and the maximum income requirements for qualified disabled working individuals could be relaxed. This must apply equally to all persons who meet institutional criteria, regardless of the program type (e.g., Personal Care Option, home- and community-based waiver services, etc.).

In many states, Nurse Practice Acts require that many procedures associated with personal assistance be performed or overseen by a registered nurse — even things such as giving medications to someone who cannot use her hands and must have pills placed in her mouth. The independent living movement has been working to get such Acts changed to permit “nurse delegation,.” which both brings down the cost of personal assistance services and allows consumer direction.

“It is not unusual for nurses to delegate a wide range of tasks to attendants and family members in the performance of their practice,” says the Blue Ribbon Panel. “And all states permit nurses to use wide discretion in teaching and delegating. Requirements for specific nurse oversight or firm requirements that the persons to whom tasks are being delegated have particular credentials, or that they be closely supervised at regular intervals drives up costs of care and reduces flexibility.

Several states have clarified their nurse practice acts to permit delegation to uncertified, qualified individuals with no untoward effects. Requiring long-term care providers to have professional certification in order to provide ‘low-tech’ services increases the cost of long-term care programs substantially with no discernible impact on the quality of services delivered.

Training requirements should be flexible in order to accommodate the range of needs and resources of service recipients. Training packages required at the state level are unlikely to meet the needs of any long-term care consumer from the diverse population of individuals who need those services, and are likely only to increase program costs. The consumer of long-term care services is the expert when it comes to determining her/his needs, and should be allowed to direct and provide the individualized training of her/his assistant(s).

If a minimal level of training is required for personal care providers at the state level, these programs should be administered by the consumer if desired, and should include information on consumer-directed approaches and descriptions of how to maximize the independence of individual consumers.

The Blue Ribbon Panel recommends that:

• Uncertified but competent individuals be allowed to perform certain personal assistance tasks.
• The personal assistant for a particular individual be required to have only the type of training necessary to meet the needs and preferences of the individual.

OTHER ITEMS OF INTEREST:
The following sites contain information that may be of interest. Please bear in mind that the information at these sites is not controlled by the Center for An Accessible society. Links to these sites do not imply that the Center supports either the organizations or the views presented.

Consumer Choice and Control:
Personal Attendant Services and Supports in
America: Report of the National Blue Ribbon Panel on
Personal Assistance Services, August, 1999Directory of Publicly Funded Personal Assistance Programs from the World Institute on Disability

“Understanding Medicaid Home and Community-Based Services: A Primer” — from the U.S. Dept. of Health and Human Services, available athttp://www.aspe.hhs.gov/daltcp/reports/primer.htm

Information on Home & Community-Based, Consumer-Directed, and Personal Assistance Services from the Office of Disability, Aging and Long-Term Care Policy at the U.S. Dept of Health and Human Services

How States’ “Nurse Practice” Acts work against consumer direction — from the January, 1999 Ragged Edge magazine

MiCASSA

May, 2003 — The Medicaid Community-Based Attendant Services and Supports Act of 2003, or MiCASSA (S. 971 and H.R. 2032), was re-introduced in Congress for the third time. It is the result of efforts of many organizations in the disability community that are trying to get Medicaid to pay for services in one’s own home, not a nursing home. The bill calls for Medicaid funding to be used for personal assistance services and supports for people of all ages in their homes and communities, rather than only in an institution — paying for asssistance with bathing, dressing, meal preparation, money management and certain health-related tasks.

MiCASSA redirects the focus of the Medicaid long-term services program from institutions to home and community services and supports. It enables people to make real choices.

“Most Americans who need long term services and supports would prefer to receive them in home and community settings rather than in institutions,” said Sens. Harkin and Specter in a letter to Senate colleagues when an earlier version of this bill was in Congress. “And yet, too often, decisions relating to the provision of long term services and supports are dictated by what is reimbursable under Federal and state Medicaid policy rather than by what individuals need. Right now, the Medicaid program includes a significant bias toward reimbursing services provided in institutions over services provided in home and community settings (research reveals seventy-five percent of Medicaid funds pay for services provided in institutions).

“We believe that no individual should be forced into an institution to receive reimbursement for services that can be effectively and efficiently delivered in the home or community,” they said.

Read Sens. Harkin’s and Specter’s statement on MiCassa

More about MiCassa from ADAPT, the group behind the legislation.

Read more about the nation’s institutional bias

What are “personal assistance services?”

MiCassa was last introduced in 1999, Read about the 1999 MiCassa in Ragged Edge magazine

More on the 1999 bill from
Liberty Resources
TASH

Follow the progress of MiCASSA at http://thomas.loc.gov/

 

OTHER ITEMS OF INTEREST:
The following sites contain information that may be of interest. Please bear in mind that the information at these sites is not controlled by the Center for An Accessible society. Links to these sites do not imply that the Center supports either the organizations or the views presented.

Consumer Choice and Control:
Personal Attendant Services and Supports in
America: Report of the National Blue Ribbon Panel on
Personal Assistance Services, August, 1999Directory of Publicly Funded Personal Assistance Programs from the World Institute on Disability

“Understanding Medicaid Home and Community-Based Services: A Primer” — from the U.S. Dept. of Health and Human Services, available athttp://www.aspe.hhs.gov/daltcp/reports/primer.htm

Information on Home & Community-Based, Consumer-Directed, and Personal Assistance Services from the Office of Disability, Aging and Long-Term Care Policy at the U.S. Dept of Health and Human Services

How States’ “Nurse Practice” Acts work against consumer direction — from the January, 1999 Ragged Edge magazine

Study confirms people prefer ‘consumer control’ of in-home services

April 21, 2003 — “Apparently, (participants) find that having intimate care, such as help with bathing and dressing, performed by a person of one’s own choosing is much more satisfying that having it performed by a stranger.” This seemingly obvious statement is the conclusion reached in a study of consumer-directed in-home services.

The just-released study, by the evaluation firm Mathematica, Inc., has found high consumer satisfaction with the “Cash and Counseling” project in Arkansas. Cash and Counseling, a demonstration grant funded by the Robert Wood Johnson foundation and the U.S. Dept. of Health and Human Services, has been in operation in Arkansas, Florida and New Jersey. (Read more about this program.)

“Our survey of 1,739 elderly and nonelderly adults showed that relative to agency-directed services, Cash and Counseling greatly improved satisfaction and reduced most unmet needs. Moreover, contrary to some concerns, it did not adversely affect participantsÕ health and safety,” said the report, released in mid-April, 2003.

The study is one of the first independent scholarly verifications of what disability rights activists have insisted for decades: that people do better — and get better services — when in charge of their own personal care.

But industry and medical professionals have argued that “consumer-direction” isn’t “safe.”

This study refutes that. The program in Arkansas “appears to have reduced the reported incidence of neglect by paid caregivers by 58 percent for consumers,” says the study.

“Arkansas designed IndependentChoices as a voluntary demonstration for people age eighteen or older who were eligible for Medicaid personal care services,” says the study. “Enrollment and random assignment began in December 1998 and continued until the evaluation target of 2,000 enrollees (about 11 percent of Arkansas users of personal care services) was met, in April 2001.”

Those planning to enroll in the program were told what their monthly financial allowance would be, and that they could use the money to hire workers — not spouses — and “to purchase other services or goods related to their needs, such as supplies, assistive devices, and home modifications.”

Read the study results “Improving The Quality Of Medicaid Personal Assistance Through Consumer Direction.”

Read more about safety concerns that have dogged the concept of personal assistance.

Learn more about the Cash and Counseling programs from theUniversity of Maryland Program on Aging.

OTHER ITEMS OF INTEREST:
The following sites contain information that may be of interest. Please bear in mind that the information at these sites is not controlled by the Center for An Accessible society. Links to these sites do not imply that the Center supports either the organizations or the views presented.

Consumer Choice and Control:
Personal Attendant Services and Supports in
America: Report of the National Blue Ribbon Panel on
Personal Assistance Services, August, 1999Directory of Publicly Funded Personal Assistance Programs from the World Institute on Disability

“Understanding Medicaid Home and Community-Based Services: A Primer” — from the U.S. Dept. of Health and Human Services, available athttp://www.aspe.hhs.gov/daltcp/reports/primer.htm

Information on Home & Community-Based, Consumer-Directed, and Personal Assistance Services from the Office of Disability, Aging and Long-Term Care Policy at the U.S. Dept of Health and Human Services

How States’ “Nurse Practice” Acts work against consumer direction — from the January, 1999 Ragged Edge magazine

Abuse of seniors under-reported, says study

Dec. 8, 2003 — Because state laws vary, reporting of instances of “elder abuse” vary widely, says a new study from University of Iowa researchers.

According to the article, published in the Dec. 2003 issue of the American Journal of Public Health, there were

• 190,005 domestic elder abuse reports from 17 states, a rate of 8.6 per 1000 elders;
• 242,430 domestic elder abuse investigations from 47 states, a rate of 5.9; and
• 102,879 substantiations from 35 states, a rate of 2.7.

“Significantly higher investigation rates were found for states requiring mandatory reporting and tracking of numbers of reports,” say the researchers.

The study examines abuse that occurs in private residences, not nursing homes, the study’s author, lead investigator Dr. Gerald Jogerst told reporters. The Iowa research, he said, follows a 1996 report that found only one in five cases of elder abuse is reported and substantiated.

Abuse of individuals from those providing personal assistance is an ongoing concern to the disability rights movement. Abuse is chronically under-reported both for seniors and for non-elderly disabled people.

More about this study can be found online at the website of theAmerican Journal of Public Health.

Read an Associated Press story from FindLaw.

OTHER ITEMS OF INTEREST:
The following sites contain information that may be of interest. Please bear in mind that the information at these sites is not controlled by the Center for An Accessible society. Links to these sites do not imply that the Center supports either the organizations or the views presented.

Consumer Choice and Control:
Personal Attendant Services and Supports in
America: Report of the National Blue Ribbon Panel on
Personal Assistance Services, August, 1999Directory of Publicly Funded Personal Assistance Programs from the World Institute on Disability

“Understanding Medicaid Home and Community-Based Services: A Primer” — from the U.S. Dept. of Health and Human Services, available athttp://www.aspe.hhs.gov/daltcp/reports/primer.htm

Information on Home & Community-Based, Consumer-Directed, and Personal Assistance Services from the Office of Disability, Aging and Long-Term Care Policy at the U.S. Dept of Health and Human Services

How States’ “Nurse Practice” Acts work against consumer direction — from the January, 1999 Ragged Edge magazine

Consumer direction and control

Most people who require the help of others to perform basic tasks like bathing or dressing. prefer to retain control over these services, if they can. They prefer to live at home.

But there’s still a bias in public policy toward providing services only in large institutions. Administrators often distrust people to be in charge of their own personal assistance.

The idea of “consumer direction” is unnerving to many state Medicaid officials and administrators. A study released in January 1999 found that state administrators by and large distrust programs that give money directly to individuals to hire their own personal assistance. The study, conducted by the National Institute on Consumer-Directed Long Term Services, surveyed 257 administrators of state departments of aging, Medicaid, mental retardation/developmental disabilities and vocational rehabilitation in all 50 states to get an idea of what they thought of giving people funds to hire personal assistance workers.

Nearly half of the state administrators in the study said they had concerns about “the lack of quality assurance” when people hire their own assistants.

They were also worried about fraud and abuse in the programs; and they felt that running programs that let people hire their own assistants “could be difficult to implement.”

Agency-directed home “health care” services fall under the medical model; consumer-directed personal assistance services are based on the independent living model.

“Cash and Counseling” programs are testing the consumer direction model.

Through the Cash and Counseling demonstration projects, the U.S. Dept. of Heath and Human Services is seeking to confirm the worthiness of what the independent living movement has wanted for years — control of one’s own personal assistance services.

In 1996, four states — Arkansas, Florida and New Jersey — were funded by The Robert Wood Johnson Foundation and the Office of the Assistant Secretary for Planning and Evaluation at the U.S. Department of Health and Human Services “to test the idea of giving Medicaid recipients with disabilities the choice of traditional services or cash along with counseling assistance. “

The University of Maryland Center on Aging was designated to be the national program office responsible for directing and coordinating the demonstration and providing technical assistance to the states, in collaboration with the National Council on the Aging, Inc.

The project’s evaluation component is being conducted by Mathematica Policy Research, Inc. Several final project reports are now available at the Mathematicawebsite.

Read an overview of the Cash and Counseling Project athttp://www.inform.umd.edu/EdRes/Colleges/HLHP/AGING/CCDemo/NCILmemo.html

Learn more about the Cash and Counseling programs from the University of Maryland Program on Aging.

OTHER ITEMS OF INTEREST:
The following sites contain information that may be of interest. Please bear in mind that the information at these sites is not controlled by the Center for An Accessible society. Links to these sites do not imply that the Center supports either the organizations or the views presented.

Consumer Choice and Control:
Personal Attendant Services and Supports in
America: Report of the National Blue Ribbon Panel on
Personal Assistance Services, August, 1999Directory of Publicly Funded Personal Assistance Programs from the World Institute on Disability

“Understanding Medicaid Home and Community-Based Services: A Primer” — from the U.S. Dept. of Health and Human Services, available at http://www.aspe.hhs.gov/daltcp/reports/primer.htm

Information on Home & Community-Based, Consumer-Directed, and Personal Assistance Services from the Office of Disability, Aging and Long-Term Care Policy at the U.S. Dept of Health and Human Services

How States’ “Nurse Practice” Acts work against consumer direction — from the January, 1999 Ragged Edge magazine

The ‘Money Follows The Person’ Act

Aug. 12, 2003 — The Money Follows the Person Act introduced in Congress last month by Sens. Tom Harkin (D.-IA) and Gordon Smith (R. – OR) is an effort to put into bill form the President’s 2004 Budget proposal to encourage states to allow the money to follow the person, so people who are living in nursing homes or other institutions could have the money “follow them” as they move out into the community onto community based services. The bill is S. 1394. “This bill does not replace MiCASSA,” says disability rights organizer Stephanie Thomas. MiCASSA (S 971 and HR 2032), calls for Medicaid funding to be used for personal assistance services and supports for people of all ages in their homes and communities, rather than only in an institution — paying for asssistance with bathing, dressing, meal preparation, money management and certain health-related tasks. MiCASSA redirects the focus of the Medicaid long-term services program from institutions to home and community services and supports. It enables people to make real choices. “Most Americans who need long term services and supports would prefer to receive them in home and community settings rather than in institutions,” said Sens. Harkin and Specter in a letter to Senate colleagues when an earlier version of MiCassa was in Congress. “And yet, too often, decisions relating to the provision of long term services and supports are dictated by what is reimbursable under Federal and state Medicaid policy rather than by what individuals need. Right now, the Medicaid program includes a significant bias toward reimbursing services provided in institutions over services provided in home and community settings (research reveals seventy-five percent of Medicaid funds pay for services provided in institutions). “We believe that no individual should be forced into an institution to receive reimbursement for services that can be effectively and efficiently delivered in the home or community,” they said. Read Sens. Harkin’s and Specter’s statement on MiCassa More about MiCassa from ADAPT, the group behind the legislation. Read more about the nation’s institutional bias What are “personal assistance services?” MiCassa was last introduced in 1999, Read about the 1999 MiCassa in Ragged Edge magazine More on the 1999 bill from Liberty Resources TASH Follow the progress of S 1394 at http://thomas.loc.gov/ OTHER ITEMS OF INTEREST: The following sites contain information that may be of interest. Please bear in mind that the information at these sites is not controlled by the Center for An Accessible society. Links to these sites do not imply that the Center supports either the organizations or the views presented. Consumer Choice and Control: Personal Attendant Services and Supports in America: Report of the National Blue Ribbon Panel on Personal Assistance Services, August, 1999Directory of Publicly Funded Personal Assistance Programs from the World Institute on Disability “Understanding Medicaid Home and Community-Based Services: A Primer” — from the U.S. Dept. of Health and Human Services, available athttp://www.aspe.hhs.gov/daltcp/reports/primer.htm Information on Home & Community-Based, Consumer-Directed, and Personal Assistance Services from the Office of Disability, Aging and Long-Term Care Policy at the U.S. Dept of Health and Human Services How States’ “Nurse Practice” Acts work against consumer direction — from the January, 1999 Ragged Edge magazine

Louisiana finally implements Olmstead decision

Jan. 27, 2004 — Last week, Louisiana’s 200,000 Medicaid recipients began receiving notice from the state that they would not have to automatically enter a nursing home when they began to need asssistance. The state, after years of wrangling, finally began allowing people a choice in where to receive assistance — in their homes or nursing homes. A story in the Jan 23 Baton Rouge Advocate notes that “residents should begin receiving services sometime next month.” (Read story.) Advocate state government reporter Marsha Shuler has been following this story for several years. It began when The Advocacy Center, the state’s Protection and Advocacy program, sued the state for failing to provide services in the community as well, following the Supreme Court Olmstead decision. “The lawsuit, Barthelemy v. Hood, charged the state with unconstitutionally forcing the elderly and disabled into nursing homes because of a lack of home and community care,” wrote Shuler in her Jan. 23 story. The nursing home industry fought the change. A report issued shortly before the settlement noted that 93 percent of Louisiana’s budget for long-term care goes to support nursing homes. That’s about $600 million per year. LA nursing home industry lobbyist Joe Donchess told reporters state does not provide enough money to keep nursing homes operating and urged lawmakers to resist settling the suit. (More on the report). But the suit was settled shortly thereafter, in summer, 2001.Read about the settlement. Read Marsha Shuler’s story Contact Marsha Shuler Visit the Advocacy Center website. Contact Advocacy Center attorney Nell Hahn (337) 237-7380.

Nursing home data can help with providing community alternatives, says attorney

Jan. 20, 2004 — There are at least 267,691 disabled people, old and young, nationally, who are living in nursing homes but who want to move out, says national disability rights attorney Steve Gold. Gold’s Information Bulletins, a service developed for advocates working to expand alternatives to nursing homes, explains to advocates how to find out statewide figures on the number of individuals in nursing homes who would like to live in the community, using information available from the federal Centers for MEedicare and Medicaid Services (CMS).

“Minimum Data Set (MDS) assessment forms are completed for all residents in certified nursing homes, regardless of source of payment for the individual resident,” says CMS. The Minimum Data Set (MDS) is part of the federally mandated process for clinical assessment of all residents in Medicare or Medicaid certified nursing homes.

MDS assessment data are used to generate

• Quality Indicator Reports, which present data on 24 “indicators of quality of care” — presented at a state and national level, and
• Active Resident Reports, which contains data for residents currently in nursing homes presented at a state and national level.

Community Preference Data

“Discharge Potential and Overall Status” figures provide the numbers of individuals state by state who have expressed a preference for living in the community (data as of Dec. 30, 2003) Information as to how advocates can use this data, as well as a breakdown in counts, is available in Gold’sInformation Bulletin # 58

Assistive Technology Needs Data

“Nationally, he says, data shows that 10 percent of nursing home residents are ‘rarely or never understood’ ” by staff, “and another 16 percent are only ‘sometimes understood.’ In numbers, that is about 350,000 persons.”

In Information Bulletin # 63, Gold explains how advocates can use information contained in the MDS to determine the numbers and locations of nursing home residents who need but do not have assistive technology, such as assisted speech, or even motorized wheelchairs to allow them some control over their environment in nursing homes.

“Widespread absence of such minimal assistive technology,” says Gold, “adds to the institutionalized persons feelings of powerlessness and hopelessness and of being trapped.”

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OTHER ITEMS OF INTEREST:
The following sites contain information that may be of interest. Please bear in mind that the information at these sites is not controlled by the Center for An Accessible society. Links to these sites do not imply that the Center supports either the organizations or the views presented.

Consumer Choice and Control:
Personal Attendant Services and Supports in
America: Report of the National Blue Ribbon Panel on
Personal Assistance Services, August, 1999Directory of Publicly Funded Personal Assistance Programs from the World Institute on Disability

“Understanding Medicaid Home and Community-Based Services: A Primer” — from the U.S. Dept. of Health and Human Services, available athttp://www.aspe.hhs.gov/daltcp/reports/primer.htm

Information on Home & Community-Based, Consumer-Directed, and Personal Assistance Services from the Office of Disability, Aging and Long-Term Care Policy at the U.S. Dept of Health and Human Services

How States’ “Nurse Practice” Acts work against consumer direction — from the January, 1999 Ragged Edge magazine