Waiting List Reduction Strategies

:
A National Perspective

Robert M. Gettings
at a hearing before the

Interim Joint Committee on Health Care Services and Support to Persons with Developmental Disabilities Colorado Legislature
Denver, Colorado July 18, 2007

Presentation Aims
Pinpoint reasons why waiting lists exist Explore state waiting list strategies Identify waiting list management techniques Examine implications for Colorado

Inadequate System Capacity
State DD service systems operate under strict spending and capacity controls DD services budgets are not tied to changes in service demand The availability of dollars is influenced by the overall health of the state’s budget

Supply Factors
Policy changes can influence system capacity
Institutional downsizing/closures

cont…

1987 PASARR amendments restricted current and future nursing home placements

Increased longevity has reduced system-wide turnover thus necessitating greater capacity
Average lifespan of persons with intellectual disabilities has increased dramatically over the past 6 decades

Factors Contributing to Growing Demand
Demographics of the “Baby Boom” generation
Age cohort born in the 20 years following World War II includes a disproportionate number of individuals with disabilities Many now live with aging parents whose caretaking skills are declining The children of Baby Boomers in turn contribute to the growing demand

Demand Factors

Cont…

Redirected demand -- the decline in the census of state institutions, mental hospitals and nursing homes -- has resulted in increased demand for comm. alternatives Changes in service eligibility
Most states have adopted a functional definition of eligibility, thus expanding the eligible target population Emergent populations – e.g., autism

Demand Factors
The “Woodwork Effect”

cont…

When the only option was an institutional placement, many families chose not to seek services. Now that a broader range of community supports are available more families take advantage of available public services

Changing family dynamics
fewer intact, two-parent families = greater demand for outof-home placements; higher % of two-worker families = increased family stress and fewer caretaking options

Demand Factors

cont…

Heightened family expectation driven by universal access to special education services Litigation has forced states to reconsider the adequacy of DD services since the late 90s.
Lawsuits challenge waiting lists on the grounds that they violate federal Medicaid law and/or the ADA as interpreted by the U.S. Supreme Court in its 1999 Olmstead ruling While the state of the law in this area remains unsettled, there is little question that lawsuits are forcing states to commit additional dollars to waiting list reduction efforts

Future Trends
The bulge in demand will continue until the impact of the Baby Boom generation and its echo effects subside. The demand for out-of-home services will remain especially high given the fact that only about one in five consumers are currently receiving such services States with long waiting lists will have to commit additional resources to achieve sustainable reductions The number of special education grads requiring adult supports will remain high for years to come.

State Waiting List Reduction Strategies
States can employ two basic strategies to reduce waiting lists:
Invest additional dollars to expand services to unserved and/or under-served individuals/families Improve the cost-effectiveness of existing services

Most states use a combination of these two strategies, with the balance dictated by the nature of current systemic shortcomings

Reduction Strategies

cont…

Service capacity varies enormously from state to state
In 2005, overall residential capacity ranged from a high of 317 beds per 100,000 in ND to a low of 63 beds per 100,000 in NV National average: 139 beds per 100,000 Colorado had a capacity of 108 bed per 100,000, or 29% below the national average & 201% below the average of the top quartile of states

Reduction Strategies

cont…

Per person expenditures also vary significantly from state to state
Average per capita expenditures in 2005 ranged from a high of $104,735 in TN to a low of $24,724 in AZ The national average was $53,704 Average per capita expenditures in Colorado were $43,003, or 25% below the national average & 85% below the average for the top quartile of states

Nature & depth of capacity deficits dictates the aims of a state’s reduction strategies

Waiting List Reduction Strategies:
A Simplified Matrix
HIGH COST Improve CostEffectiveness LOW COST Increase Resources

HIGH SERVICE

LOW SERVICE

Improve CostEffectiveness & Increase Resources

Increase Resources

Common State Strategies
Develop service options that deflect demand for out-of-home placements Promote self-directed services that afford families greater choice and control Increase funding to improve access to needed services and supports Often state waiting list initiatives involve a combination of these three strategies

Middle Range Options
Community DD service systems historically have forced families to choose between a limited array of family supports and waiting indefinitely for a group home placement Rapidly expanding waiting lists have resulted To rectify the situation, some states have launched supported living waiver programs offering families a flexible array of services other than 24-hour residential supports

Mid-Range Options

cont…

Colorado, with its Supported Living Waiver Program, was the first state to employ this strategy; other states (OK; KY; PA; and MA) soon followed A recently completed national study found that 17 states were operating supports waiver programs for individuals with DD

Mid-Range Options

cont…

The features of supports waiver programs vary from state to state. In general, however, they:
Impose limits on total per participant expenditures that are considerable below the cost of the traditional “full service” package Exclude round-the-clock residential services Stress the flexible use of available dollars by individuals/families Target persons living in their own home or in the home of their family

Self-Directed Service Options
Waiting list reduction efforts are linked to self-directed service initiatives in many states
Individuals/families granted greater latitude in choosing & managing their services in exchange for a fixed individual budget The aim is to improve cost efficiency while enhancing consumer choice & control

Success hinges on stakeholder acceptance of a methodology for determining individual budget allocations

Funding Increases
Many states have concluded that additional public dollars are required to achieve sustainable waiting list reductions
States were able to leverage additional federal Medicaid payments during the 80s and 90s to cover the cost of expanded services But, with state/local dollars fully matched, new general revenues are required to fuel further expansion

State have followed different paths in financing expanded system-wide capacity

Waiting List Reduction in Maryland
MD Gov. announced a five year plan to serve all wait-listed individuals in Jan. 1998
Plan called for increasing the number of persons receiving comm. service by 6,000 (from 15,000 to 21,000) At the time, 5,400 were waiting for services One unique component of the plan was to equalize the salaries of public and private direct support staff Funds included to increase residential capacity by 17%, extend day services to an additional 1,100 individuals, including day supports for all young adults exiting special education.

Maryland’s Experience

cont…

MD legislature approved the Gov.’s plan and proceeded to appropriate the funds necessary to implement it over the next 5 years No. of persons receiving out-of-home res. services increased by 2,361, while enrollment in HCBS waiver services more than doubled (from 3,353 to 8,753) Residential capacity grew from 96/100,000 to 130/100,000 over the period. But, the state’s waiting list continued to grow (to 7,710 by 2005)

Waiting List Reduction in New York
NY Gov. announced a 5-years waiting list reduction initiative in August 1998 Called NYS-CARES, the original, $245 million plan called for adding 4,900 community residential placements, 1,000 new day service opportunities, and expanded family support services NYS-CARES was expanded in 2004 to a ten year initiative

New York’s Experience

cont…

This year, NY/OMRDD plans to launch Phase III of NYS-CARES, with a 5-year goal of creating 1,000 additional res. placements, 200 new day and 2,500 new in-home residential habilitation opportunities The state’s total res. capacity increased by 9,934 between 1998 & 2005 Res. capacity per 100,000 in the general population has increased from 195 to 236

New York Experience

cont…

Yet, as of July 2005, an additional 5,273 persons were expected to need an out-of-home placement within the next 24 months NY illustrates the type of sustained commitment required to keep pace with growing demands

Waiting List Reduction in Massachusetts
In 1997, Massachusetts established a goal of eliminating the waiting list over an 8-year period One key feature of the plan involved ensuring that every special education graduate gained access to needed comm. services

Massachusetts’ Experience

cont…

In Jan. 2001, the state entered into a settlement agreement in a class action lawsuit. Over a 5-year period, the Boulet agreement committed the state to:
Expanding comm. res. alternatives by 1,975 Furnishing interim services to persons awaiting res. placements Expending $355.8 M to expand services over the period

Massachusetts’ Experience

cont..;

Between 1998 and 2005, MA increased overall res. capacity by 1,443 (from 9,835 to 11,278) The No. of persons receiving res. services grew from 160/100,000 to 176/100,000 The number of persons waiting for res. services dropped precipitously over the period (from 3,371 in 1998 to 372 in 2005)

Managing Waiting Lists
States have learned the importance of having clearly delineated waiting list management practices Managing waiting lists involves 4 key tasks:
Articulating a clear set of statewide policies Determining service priorities Specifying the interim services to be available to wait-listed individuals/families Developing a waiting list tracking & reporting system

Key Lessons for Colorado
In Colorado, additional state resources will be an essential element in any successful waiting list reduction strategy Adopt a multi-year plan for reducing the existing waiting list over a 5-10 year period. The plan should be developed by the executive branch in accordance with legislative specifications, with the final product subject to legislative approval Take into account projections of future needs in establishing plan goals and objectives

Colorado Lessons

cont…

Within the plan, emphasize: (a) the availability of supports to all special education graduates who need them; and (b) services to older parents providing home-based care Offer a wide range of alternative supports, with the emphasis on maximizing access to generic housing and daytime support options, shared living arrangements and self-directed supports Improve the state’s crisis intervention capabilities in an effort to prevent premature out-of-home placements

Colorado Lessons

cont…

Create a single, statewide waiting list and centralize priority setting Establish a Waiting List Advisory Committee to give stakeholders a direct voice in implementation of the initiative Improve statewide training, technical assistance and quality oversight capabilities

Colorado Lessons

cont…

Weigh the merits of possible new federal financing alternatives, including:
The optional state plan coverage of HCBS services under Sec. 1915(i) The optional state plan coverage of self-directed services under Sec. 1915(j) The integration of Medicaid and Medicare funding through Special Needs Plans authorized under Sec. 231 of the Medicare Modernization Act

QUESTIONS?