ODDC- Olmstead: Reclaiming Institutionalized Lives - Leasons Learned and NCD's Recommendations

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TITLE: Olmstead: Reclaiming Institutionalized Lives- Lessons Learned and NCD’s Recommendations -August 14, 2003

Author: National Council on Disability, (Katherine Cargill-Willis 12/21/03) http://www.ncd.gov/newsroom/publications/reclaimlives.wpd Mark Quigley or Martin Gould

Kathy’s Note: The original report is over 400 pages. I have decided to divide into four reports:

Views of people with disabilities, demographics and barriers to community integration
Ohio’s progress
Court cases
Lessons learned and NCD recommendations

Good Practices: Several states have diversion programs to maintain people in the community, transition programs to actively move individuals from institutional settings to alternative community placements, and program models in which the "money follows the person" to assure stability of community living. One of the most notable is West Virginia. Their plan provides for an executive staff member on loan to serve as Olmstead director; an administrative assistant; office support; release time for agency and provider staff to serve on the Olmstead task force; travel and other compensation for consumers to serve on the task force; and a toll-free line answered by the Olmstead director. Four regional Olmstead Specialists will be hired to respond to local inquiries, conduct training, maintain regional resource databases and assist in transition and diversion activities and grievance procedures.

Overcoming Incentives to Unnecessary Institutionalization:

Minnesota has encouraged the nursing facility industry to decrease beds with 2000 legislation allowing them to place beds in "layaway" for up to five years - to take them temporarily out of services and have them be treated as though they were unlicensed during that interval. In the first 18 months of the "layaway" program, nursing facility operators took 2,350 nursing facility beds out of service. In 2001 additional legislation established the goal of closing or partially closing up to 5,140 beds during fiscal years 2002 and 2003, reducing nursing home beds 9.5 %

Money follows the person

New Mexico is developing a "global funding" waiver request to CMS that allows the Medicaid reimbursement be attached to the consumer. Consumers of long-term care services will be able to move from one setting to another without having to go on a waiting list.
South Carolina negotiated voluntary separation agreements with institutional employees, and those FTEs were then deleted from the institutional budget line and the funds transferred to local disability boards.

Identification and Transition of People from Institutions

In both Kansas and Colorado, ADAPT is working in nursing facilities to identify and inform people in nursing facilities who wish to move to the community. With the cooperation of the Kansas Departments of Aging and Social and Rehabilitation Services, ADAPT members go into facilities to provide information about services, assistance with moving out, advocacy, and follow-up.

Use of Trusts and Fine Funds to Finance Transition Costs and Start-Up of Community Services

OHIO deposits a third of the proceeds from the collection of franchise permit fees and penalties paid by nursing facilities and hospitals are to be deposited in a "home and community-based services for the aged fund" and used to fund programs for Medicaid beneficiaries, including the PASSPORT waiver.

Housing Strategies: Housing is the biggest barrier to community integration and to Olmstead implementation.

Mississippi’s Olmstead plan trains case managers in housing facilitation; expands services under HCBS waivers to include home modifications and home repair; and encourages the Mississippi Development Authority to allocate 5 to 10 percent of all state housing funds granted to cities and counties to be used for people with disabilities. It earmarks 10% of Section 8 vouchers for people with disabilities and increases funding to cover down payments and closing costs.

Single-Point-of-Entry Systems: Single points of entry have the potential to reduce unnecessary institutionalization by providing easier access to a wider array of community services. Single-point-of-entry systems that separate assessment and service brokerage from agencies that provide services promoting people to choose among qualified providers.

North Carolina’s plan calls for reorganizing the department from its present divisional model to a cross-disability framework that is intended to foster the development of common approaches to similar issues. The Area Agencies will be reorganized into Local Management Entities (LMEs) that will develop local business plans for development of services and manage a network of providers. To receive public funds, the provider must be a member of the network.

Increasing Community Integration:

Vermont is reducing the size of community residential settings, expanding supported employment and phasing out group homes in favor of more normal settings such as supervised apartments, companion homes, and adult foster homes. From 1993 to 1999, the number of persons in supervised apartments increased by 30% and the number of persons in developmental homes increased by more than 80%. The primary focus of the community service system is a "developmental home," defined as a home where a person with disabilities lives with a companion or an adult foster home in which the person lives in a preexisting household. Benefits of that model include tax-free payments to foster families.

Lessons learned: From the $50 million the Department of Health and Human Services (HHS) provided to states to assist them in developing and improving home-and community-based services and plan for Olmstead implementation, initial awards of $50,000 were made to all states and territories requesting them. These start-up funds will help pay for the planning and public-private partnerships and task forces to advise the states on how to increase services and supports to people with disabilities. HHS has summarized some of the lessons learned from states, including:

Nursing homes should hire someone to facilitate transitions and to work with housing authorities and private landlords.
Flexible funding should be made available for people leaving nursing facilities for move in expenses.
Nursing facility transition programs should be closely coordinated with community-based services programs.
Transition programs should implement aggressive outreach efforts to notify nursing facility residents of the opportunities for receiving assistance and encouraging them to take an active role in planning their own return to community life.

Unresolved Issues:

Few plans explicitly address the creation of opportunities to live in the most integrated setting, as people are most likely to define "the most integrated setting."
Few Olmstead plans consider institutional populations other than people in nursing facilities, developmental disabilities institutions, and psychiatric institutions, although 800,000 people live in board and care facilities.
Few state plans identify persons with mental illness living in nursing facilities and other institutional settings.
Although the majority of state spending on HCBS waiver services is still targeted to people with developmental disabilities, the plans that have targets for people with developmental disabilities to move to the community are extremely modest.
Few states have plans for assessing people with disabilities in institutions to determine if they can handle and benefit from community living.
Few plans contain timelines and targets for community placement. Without knowing who will move and what needs they have, it is impossible to develop the community support and services needed or develop budget proposals.
Most states have failed to examine barriers to community integration that could be removed quite cost-effectively, such as differences in coverage of health-related services under state HCBS waivers and nursing facilities.
There are several states that are not in compliance with Medicaid choice of provider requirements or have failed to separate assessment from service delivery.
In many states, consumers and advocates are well represented if not leading members, and concurrent or preexisting long-term care planning processes where stakeholders are represented, but there are internal activities of the state agency. Some states, such as Ohio, used previous long-term care planning as the basis for a later Olmstead plan but the original plans have not necessarily conformed to Olmstead.
Although federal initiatives, such as the "Disability Advocacy in a post-Olmstead Environment," and the Real Choice Systems Change grants have had the greatest positive impact on the planning process, they have been difficult to integrate into states’ overall service delivery systems. Federal initiatives in housing had little impact on state Olmstead plans.
Few planning groups include representatives of housing, transportation, and education agencies.
State budgets often do not reflect Olmstead planning goals.
In most states, disability organizations not elder organizations have been true collaborators in the planning process.
The deinstitutionalization has slowed since the 1990s. Medicaid expenditures on nursing facility services have increased significantly in most states from 1996 to 2001, due to in part to an oversupply of nursing facility beds and the relative absence of community support and services for elders with significant disabilities.

NCD’s Recommendations:

HHS and CMS provide more explicit guidance on implementation of Olmstead v. L.C., with time lines and measurable goals.
Federal agencies complete the review of their own regulations for consistency with the ADA they began in response to an Executive Order directing them to "evaluate the policies, programs, statutes and regulations of their respective agencies to determine whether any should be revised or modified to improve the availability of community-based services for qualified individuals with disabilities."
CMS review its regulations governing admission, discharge, and utilization control to determine their consistency with the ADA. CMS enforce the regulations that are consistent with the ADA to ensure that the states comply with the law in carrying out utilization review and professional review of the appropriateness and quality of care and services furnished to those institutionalized.
CMS enforce the utilization control regulation that governs inspections of care in intermediate care facilities, nursing homes and institutions for mental diseases to require states to assess and identify residents of these facilities who can handle and benefit from community living. The comprehensive assessment of the person’s needs must include assessment of the person’s "discharge potential."
CMS exercise its "look-behind" authority to determine whether the states are adequately identifying residents of Title XIX-certified facilities who can handle and benefit from community living.
HHS refocus its Real Choice Systems Change Grant Program as a true system-change project by shifting from funding short-term demonstration projects to funding change that affects entire service systems.
HHS require the states to identify all institutionalized persons in the state and their need for community services. To maximize objectivity and cost-effectiveness, identification and assessment should be carried out by independent agencies under contract with public agencies.
HHS regularly publish the number of persons with disabilities waiting for community services, and the number living in the community and in institutions. Waiting list data have become a highly sensitive issue in many states because of the existence or threat of litigation.
CMS use its waiver approval authority to require the states to minimize "institutional bias" in the choice between institutional and HCBS waiver services. CMS should require states to show in their waiver applications that the array of services in the community is sufficient to allow recipients a genuine choice.
CMS enforce the assurances states are required to give in return for funding under the HCBS, especially the requirement that Medicaid beneficiaries who are eligible for services in an ICF/MR or nursing facility be notified of the feasible alternatives under the waiver and given the choice of services under the waiver or services in a facility.
The United States Department of Education play a stronger role in Olmstead implementation. The Office of Special Education Programs needs to be much more proactive in addressing the problem of children with disabilities who receive their education in residential treatment facilities and juvenile detention centers to provide appropriate transition services to meaningful employment as adults. The Rehabilitation Services Administration should provide vocational rehabilitation funds to the states earmarked for Olmstead-related activities.
HHS support and fund Relocation Specialists based in independent advocacy organizations such as the Centers for Independent Living, People First organizations, or similar advocacy organizations to assist people in moving from institutions and nursing facilities.
Federal Government support and fund Protection and Advocacy agencies in Olmstead-related activities.
Federal agencies provide federal financial assistance to states to provide small grants to people with disabilities for transition costs from institutions to community.
HUD continue its efforts to simplify the ConPlan process, work to simplify other aspects of federal housing programs, and support focused advocacy and service brokerage for people with disabilities to access federally supported housing programs.

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