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 cont…

Policy changes can influence system capacity

 Institutional downsizing/closures
 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 cont…

The “Woodwork Effect”

 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 out-
of-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 un-
served 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 LOW COST

HIGH Improve Cost- Increase
SERVICE Effectiveness Resources

LOW Improve Cost- Increase

SERVICE Effectiveness & 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?