Medicaid waivers need oversight, says GAO

Disability activist calls report ‘paternalism’
July 8, 2003 — Over the past 10 years, Medicaid has increasingly moved to allow personal assistance services in one’s home, rather than a nursing home.

These services, though, are still not a mandated service under the Medicaid program. Medicaid provides them under “waivers.”

In the last decade, these waivers — called “home and community-bases services” (HCBS) waivers — grew from $1.6 billion to $14.4 billion. “The number of waivers, participants, and average state per capita spending also grew significantly,” says the General Accounting Office. “Since 1992, the number of waivers increased by almost 70 percent to 263 in June 2002, and the number of beneficiaries, as of 1999, had nearly tripled to almost 700,000.” Only slightly over half — 55 percent — of the beneficiaries of these waivers were elderly persons; the rest were non-elderly people who need assistance with tasks of daily living but who do not want to live in institutions.

The disability rights movement has been urging Congress for over a decade to change the Medicaid program so that each Medicaid recipient is free to choose whether to receive services paid for by Medicaid in an institution, or at home. Yet the Medicaid legislation has not yet changed; it still specifies placement in an institution. However, the program allows for “waivers,” and it is via these waivers that in-home services are today being provided through Medicaid.

In its July 7, 2003 report, the GAO said that “in the absence of specific federal requirements for HCBS quality assurance systems, states provide limited information to the Centers for Medicare & Medicaid Services (CMS), the federal agency that administers the Medicaid program, on how they assure quality of care in their waiver programs.

“CMS has not developed detailed state guidance on appropriate quality assurance approaches as part of initial waiver approval,” said the report. “Although CMS oversight has identified some quality problems in waivers, CMS does not adequately monitor state waivers and the quality of beneficiary care.” (An earlier report by the Government Accounting Office (GAO-02-431R) has noted that there is no correlation between nursing home funding and improved quality of care. )

The report — and the July 8 New York Times editorial praising the report — harms the move toward in-home services, says ADAPT’s Bob Kafka. Groups like the American Health Care Association, the national nursing-home operators’ lobby, “now have a government report to make their case to slow down HCBS growth,” he says.

“Our reading of the GAO text finds no evidence of quality problems in actual care or of harm to consumers,” say Drs. Rosalie Kane and Larry Polivka. “Rather the GAO found the following: in some states, people who were assessed as eligible for the in-home care failed to receive the services recommended; the case management oversight was sometimes skimpy; and the oversight of the federal government and its regional offices fell short of vigorous monitoring. These were mislabeled quality problems, but are really problems in access and accountability.” Dr. Kane is with the School of Public Health and School of Social Work at University of Minnesota and Dr. Polivka directs the Florida Policy Center on Aging at the University of South Florida. ÊÊ

“The GAO report showed no phantom clients or expenditures on people who receive no service,” they say. “Rather, it showed that some states failed to serve all those they documented as eligible.” States often amass documentation of unmet needs for their planning purposes, they say.

In a statement issued Monday, Sen. Chas. Grassley (R. IA) urged that all waivers nationwide “be put on hold until the department gets a handle on the quality of care,” but Kane and Polivka say that such interruptions will simply “worsen the problem of unmet need,” and add that “many states, including Washington, a state the GAO studied in depth, have vigorous state-run quality assurance and information systems.”

“Ongoing supportive care at home and in the community works well to better the lives of people with disabilities of all ages,” they explain. “Like all health and humans services it is imperfect, but we must refrain from sacrificing community care while pursuing its improvement.”

The GAO report recommended that the Administrator of CMS “take steps to better ensure that state quality assurance efforts are adequate to protect the health and welfare of HCBS waiver beneficiaries, and strengthen federal oversight of the growing HCBS waiver programs.”

To read the report highlights (PDF document), go to http://www.gao.gov/highlights/d03576high.pdf. The report Long-Term Care: Federal Oversight of Growing Medicaid Home and Community-Based Waivers Should Be Strengthened (GAO-03-576) is available as a PDF document at http://www.gao.gov/new.items/d03576.pdf. To get either document in html form, go to Adobe and paste in its URL.

EXPERT SOURCES:

Bob Kafka
ADAPT
bkafka@juno.com
512-442-0252 (512-431-4085 cellphone.)

Rosalie A. Kane, Ph.D.
Division for Health Services Research & Policy
School of Public Health
University of Minnesota
Phone: 612-624-5171
Fax: 612-624-5434
kanex002@umn.edu
Website: http://www.bioethics.umn.edu/faculty/kane_r.shtml

Larry Polivka, Ph.D.
Director, Florida Policy Exchange Center on Aging
University of South Florida
lpolivka@admin.usf.edu
ÊWebsite: http://www.fpeca.usf.edu/

A year ‘marked by losses,’ says National Council on Disability

July 30, 2003 — The fact that access to the polls was made part of last fall’s national voting legislation ranks as one of the highlights of the year for people with disabilities, says the National Council on Disability.

It was the high point in a year otherwise marked by losses.

“A clear intent to weaken the ADA is underway,” says Council member Robert R, Davila, which, he says, suggests to many people with disabilities that they “close ranks and increase their vigilance.”

In last year’s report to Congress, NCD noted “an atmosphere of fear and uncertainty among Americans with disabilities because of the potential or real loss of legal protections. This climate of fear became pervasive in 2002,” says the Council, “as a result of the continuing trend of court decisions unfavorable to disability rights and of the federal government’s disinclination to include civil rights enforcement for people with disabilities as a major element of the New Freedom Initiative.” NCD reports that “when disability rights advocates discuss court decisions today, their focus is primarily on how to prevent or slow further erosion of civil rights.”

The NCD report highlights two 2002 Supreme Court cases:

In Toyota v. Williams the justices ruled that Toyota had not violated the law by refusing to accommodate a worker with severe carpal tunnel syndrome. The Supreme Court found that, because the individual could perform routine household tasks at home, she was not substantially limited in the major life activity of working, and, therefore, not protected by the ADA.

In Echazabal v. Chevron the Supreme Court, in deferring to the “direct threat” defense established by EEOC regulations, held that an employer can deny employment to a person with a disability if the employer determines that person might pose a danger to him or herself in the course of the employment.

“The general pattern of these and other Supreme Court decisions strip people with disabilities of the ability to enforce the ADA and other civil rights laws,” says NCD. “Faced with the disheartening and deteriorating judicial situation, NCD, in 2002, began a series of policy papers examining the Supreme Court’s ADA decisions and their meaning for people with disabilities. This project, Righting the ADA, covers the myriad of issues involved in the Court decisions and setting forth their legal and human implications. The papers explain the background of the ADA and analyze the prospects for reform.”

The series of briefswill conclude with a comprehensive report that includes legislative proposals.

Also in the report:

Hate Crimes: threats specific to people with disabilities have received far less attention than dangers facing other groups, says NCD

Healthcare: the existing reactive system “must be transformed into a proactive system of health and wellness for people with disabilities,” it asserts.

Genetic discrimination: Congress should act to curb discriminatory use of genetic information in insurance and employment, says the Council

Section 504: NCD is concerned about diminished attention to and enforcement of this anti-discrimination section of the Rehabilitation Act.

Read the report online at http://www.ncd.gov/newsroom/publications/progressreport_final.html

Contact:
Mark Quigley, Director of Communications
National Council on Disability
202-272-2004

HHS awards $40 million for programs to keep disabled in community

October 7, 2003 — The Bush Administration has announced over $40 million in a series of grants and demonstration programs awarded by the Dept. of Health and Human Services in a continuing effort to ” enable people with disabilities to reside in their homes and participate fully in community life,” as HHS Sec Tommy Thompson put it in announcing the awards.

Five new demonstration grants aimed at helping recruit, train and retain direct service workers who provide personal assistance to people with disabilities who need help with eating, bathing, dressing and other activities of daily living.

The “Demonstration to Improve the Direct Service Community Workforce” is awarding $1.4 million each to the New Mexico Department of Health, the Maine Governor’s Office of Health Policy and Finance and Pathways for the Future, a service provider in North Carolina.Each of these grantees will be offering health insurance to direct service workers during the three-year demonstration.

Grants of $680,500 each will go to the University of Delaware and Volunteers of America in Louisiana for developing educational materials, training of service workers, mentorship programs and other activities.

“These personal assistance workers are the backbone of the nation’s community-based long-term care system, and should have the same access to health insurance and other work incentives as millions of working Americans,” HHS Centers for Medicare and Medicaid Services’ Administrator Tom Scully said in a press statement. “Through these demonstrations we hope to be able to attract and retain more of them.”

The grants are part of the Administration’s New Freedom Initiative, launched in 2001, “which promotes the goal of removing barriers to community living for people with disabilities.”

Over $33 million was awarded in “Real Choice Systems Change Grants for Community Living” grants to states to help develop programs to help disabled people remain in the community and avoid institutionalization. A total of 75 grants were awarded in the $100,000 to $500,000 range. A list of these grants can be found in the press release at http://www.hhs.gov/news/press/2003pres/20031002a.html

More information about the grants and the New Freedom Initiative is available at http://www.cms.hhs.gov/newfreedom.

P&A deinstitutionalization suits ‘appropriate,’ says GAO

Nov. 25, 2003 — State agencies which file lawsuits intended to get individuals out of institutions have been operating appropriately and within their legal mandate, says a GAO study released in late October.

Protection and Advocacy agencies in all 50 states are mandated by federal law to provide legal representation, information and referral services, training and technical assistance to individuals with developmental disabilities. The agencies have initiated a number of “de-institutionalization” lawsuits, in wake of the 1999 Olmstead Supreme Court decision, to force states to provide funding for individuals in the community rather than in institutions.

“Deinstitutionalization has refocused delivery of care to this population over the last several decades from large public institutions to community settings,” says the GAO report. “Refocusing service delivery resulted from (1) the desire to deliver care in the most integrated setting and to control costs and (2) the outcomes of deinstitutionalization lawsuits brought by P&As and others.

“Some parents have raised concerns that P&As emphasize these suits over other activities, inadequately inform them of family members’ inclusion in the suits, and do not adequately monitor individuals after their transfer to the community.

“GAO was asked to review the extent to which P&As engage in lawsuits related to deinstitutionalization of these individuals, how P&As communicate with affected parents and guardians in these suits, and the role P&As have played in monitoring the well-being of individuals transferred to the community.”

GAO found that that P&As had “filed, joined, or intervened in” only 24 deinsitutionalization suits nationwide from 1975 through 2002. It reviewed suits in California, Maryland, and Pennsylvania and found the agencies’ activities in keeping with the law and their mandate.

“Lawsuits related to deinstitutionalization brought on behalf of persons with developmental disabilities are a small part of P&As’ overall activities for this population,” said the report.

Read the complete study online at http://www.gao.gov/atext/d031044.txt

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