United States General Accounting Office

GAO Report to Congressional Requesters

July 1996 MEDICAID

Waiver Program for

Developmentally

Disabled Is Promising

But Poses Some Risks

G O A

years

1921 - 1996

GAO/HEHS-96-120

GAO United States

General Accounting Office

Washington, D.C. 20548

Health, Education, and

Human Services Division

B-266320 

July 22, 1996

The Honorable William S. Cohen

Chairman

The Honorable David H. Pryor

Ranking Minority Member

Special Committee on Aging

United States Senate

The Honorable Bill Frist

Chairman

Subcommittee on Disability Policy

Committee on Labor and Human Resources

United States Senate

Adults with developmental disabilities are highly dependent on public

programs for meeting their long-term care needs. Most persons with

developmental disabilities have mental retardation, but others have severe,

chronic disability resulting from cerebral palsy, epilepsy, or other life-long

conditions, except mental illness, that began before they were 22 years

old. The population with developmental disabilities receives more than

$13 billion annually in public funding for long-term care, second only to

the elderly. More than 300,000 adults with developmental disabilities

receive government long-term services financed primarily through

Medicaid and to a lesser extent through state and local programs.

Long-term care services can include supervision and assistance with

everyday activities such as help in dressing, going to the bathroom,

managing money, and keeping out of danger. Persons with developmental

disabilities have traditionally received their long-term care in institutional

settings.

Recently, states have begun to significantly expand the use of the Medicaid

1915(c) home and community-based waiver, enacted by the Congress in

1981, to provide alternatives to institutional care for persons with

developmental disabilities.1

 The waiver program has two advantages. First,

it gives states a tool to control costs by allowing them to limit the number

of recipients served. In contrast, states must serve all eligible individuals

in the regular Medicaid program. Second, it permits states to meet the

needs of many persons with developmental disabilities by offering them a

broader range of services in less restrictive settings such as group or

1

States also use the waiver for other populations. See Medicaid Long-Term Care: Successful State

Efforts to Expand Home Services While Limiting Costs (GAO/HEHS-94-167, Aug. 11, 1994).

Page 1 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
B-266320 

family home, rather than in a Medicaid intermediate care facility for

mental retardation (ICF/MR), the setting where most of the institutional care

for this population is provided.

At your request, we examined states’ experiences in utilizing the flexibility

offered by the Medicaid waiver program to provide care for adults with

developmental disabilities in alternative settings. To understand changes

in services, cost, and quality assurance, we reviewed national data and

conducted three case studies on issues and choices states faced in using

the waiver program. Specifically, we examined (1) expanded state use of

the waiver program, (2) the growth in long-term care costs for individuals

with developmental disabilities, (3) how costs are controlled, and

(4) strengths and limitations in states’ approaches to assuring quality in

community settings.

To conduct our work, we reviewed the literature, interviewed Health Care

Financing Administration (HCFA) officials responsible for waiver programs

and national experts, and analyzed national data on Medicaid expenditures

and recipients. We also performed case studies in three states: Florida,

Michigan, and Rhode Island. We chose these states because they have

large waiver programs, provide a range in state size and geographic

representation, and have different strategies for using the waiver program.

In visits to these states, we interviewed program officials, providers,

recipients, families, and advocates. We also reviewed data on costs and

program participation for these states. We conducted our review between

May 1995 and May 1996 in accordance with generally accepted

government auditing standards. For a complete description of our scope

and methodology, see appendix I.

Results in Brief State use of the Medicaid 1915(c) home and community-based waiver has

changed the face of long-term care nationally for persons with

developmental disabilities by providing more persons with the kind of

services that most recipients and families prefer. It has significantly

expanded the number of persons served overall and resulted in more

people being served by the waiver program in group home and home

settings than in the more restrictive and often large ICFs/MR. Florida,

Michigan, Rhode Island, and other states have used the waiver program to

pursue various objectives, such as closing many large and some small

ICFs/MR, expanding services to persons previously in state-financed

programs, and including persons not previously served. Waiver program

services have been provided primarily in group homes. However, some

Page 2 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
B-266320 

states have begun to shift the focus of their waiver programs to serve more

people at home—their own home, their family’s home, or an adult foster

care home—and to provide a broader range of services tailored to

individuals’ needs and preferences.

From 1990 to 1995, Medicaid costs for long-term care services for persons

with developmental disabilities nationwide rose at an average annual rate

of 9 percent. Although most of the increase reflected increased costs for

waiver program services, increased costs for ICF/MR program services also

were a factor. Waiver program costs grew primarily because more people

were served as per capita costs for the program increased slightly less

than inflation. ICF/MR program costs increased even though the number of

ICF/MR residents declined 7 percent. The program’s cost increases resulted

solely from per capita cost growth for the ICF/MR program, which was

somewhat higher than inflation.

If not for a cap on the number of waiver program recipients in each state

and state management practices, cost growth would likely have been

higher. HCFA requires each state to set limits on the number of persons to

be served in the waiver program subject to federal approval. Therefore,

HCFA allows states to deny services to otherwise eligible individuals once

the cap is reached. In contrast, the regular Medicaid program requires that

states serve all those who meet eligibility requirements. In addition, states

use their own management practices to control costs. In the three states

we visited, these management practices include fixed agency budgets for

waiver program services and linking of the management of the care plan

and use of non-Medicaid services to individual budgets for each person

served.

A 1994 change in federal rules could result in higher caps and costs. In this

change, HCFA eased the process by which waiver program caps were

established, giving states more discretion in determining the number of

waiver program recipients. In doing so, HCFA recognized the risk of cost

increases if states increased the number of people served, but it expected

that state budget pressures would likely inhibit the size of the increase. If

states elect to use this discretion, as two states we visited said they

planned to do, a risk exists that the number of waiver program recipients

and costs could increase more rapidly.

Some states are changing their quality assurance approaches to improve

quality as services offered by the waiver program continue to evolve, but

more development is needed to reduce risks. States continue to use

Page 3 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
B-266320 

traditional mechanisms such as provider certification to assure recipient

safety. At the same time, states are introducing promising innovations to

customize quality assurance for an individual’s circumstances. For

example, states may use a combination of methods to monitor quality,

including arranging for a roommate to live with a disabled individual;

home visits from community volunteers to check on an individual’s status;

and visits from program staff at locations where the individual is likely to

be, such as his or her home or local park or library. At the heart of this

effort is the recognition that reducing the level of program restrictions and

the amount of supervision in these individuals’ lives and increasing their

choices of where they live, whom they live with, and what they do during

the day are desirable goals but can pose risks because of the cognitive and

physical impairments of the population served. State officials recognize

that increasing recipient choice and making providers compete can play

an important role in improving the quality of services provided. But they

and HCFA officials acknowledge that more remains to be done to fully

develop the quality oversight mechanisms being used. Until this occurs,

some recipients may not have better service quality and may face some

health and safety risks.

Background Medicaid funds most publicly supported long-term care services for

persons with developmental disabilities. In 1995, Medicaid provided more

than $13.2 billion to support over 275,000 individuals with these services.

To be eligible for Medicaid, individuals must generally meet federal and

state income and asset thresholds. To be considered developmentally

disabled, individuals must also have a mental or physical impairment, with

onset before they are 22 years old, that is likely to continue indefinitely

and they must be unable to carry out some everyday activities, such as

making basic decisions, communicating, taking transportation, keeping

track of money, keeping out of danger, eating, and going to the bathroom,

without substantial assistance from others.

Until recently, states provided the bulk of services for this population

through the Medicaid ICF/MR program. The ICF/MR program funds large

institutions and smaller settings of 4 to 15 beds, and both sizes of settings

are subject to the same regulatory standards. ICF/MR program services are

available and provided as needed on a 24-hour basis. These services

include medical and nursing services, physical and occupational therapy,

psychological services, recreational and social services, and speech and

audiology services. ICF/MR program services also include room and board.

Providers of ICF/MR program services must adhere to an extensive set of

Page 4 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
B-266320 

regulations and are subject to annual on-site inspections as mandated by

Medicaid.

In 1981, the Congress enacted the 1915(c) waiver allowing states to apply

to HCFA for a waiver of certain Medicaid rules to offer home and

community-based services. By 1995, 49 states had 1915(c) home and

community-based waiver programs for persons with developmental

disabilities.2

 Waiver program services vary by state, but include primarily

nonmedical services such as chore services, respite care, and habilitation

services, which are all intended to help people live more independently

and learn to take care of themselves. (See apps. II and III for a list of

waiver program services and definitions in the three states we visited).

Unlike ICF/MR program services, waiver program services do not include

room and board and are often provided on less than a 24-hour basis.

HCFA carries out its waiver program oversight responsibilities through

review of applications and renewals and monitoring of implementation

through on-site compliance reviews. In approving waivers,3 HCFA reviews

applications to ensure that (1) services are offered to individuals who, “but

for the provision of such services . . . would require the level of care

provided” in an institutional setting such as an ICF/MR;

4

 (2) total Medicaid

per capita costs for waiver program recipients are not greater than total

Medicaid per capita costs for persons receiving institutional care; and

(3) states properly assure quality.

The waiver program enables states to control utilization and costs in ways

not permitted under the regular Medicaid program. The waiver program

has a cap for the number of persons served at HCFA-approved levels. It also

allows states, with HCFA permission, to target services to distinct

geographic areas or populations, such as persons with developmental

disabilities or the elderly; offer a broader range of services; and serve

persons with incomes somewhat higher than normal eligibility thresholds.

In contrast, the regular Medicaid program generally requires that each

state provide eligible beneficiaries with all federally mandated services

and any optional services it chooses to offer.

States, however, provide some community-based services to

developmentally disabled individuals through the regular Medicaid

2

Arizona provides similar services through a Medicaid 1115 demonstration waiver.

3

Initial waiver program approvals are for a 3-year period and renewals are for a 5-year period.

4

Section 1915(c)(1) of the Social Security Act.

Page 5 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
B-266320 

program. These services include federally mandated services, such as

home health care, and other services that states may elect to provide,

which are called optional services. Some of the more important optional

services for the population with developmental disabilities are

rehabilitative services,5

 case management, and personal care. Because the

regular Medicaid program operates as an entitlement—that is, all eligible

individuals in a state are entitled to receive all services offered by the

state—states have less control over utilization and the cost of services

than in waiver programs.

States Use Waivers to

Expand and Change

Programs for

Developmentally

Disabled

Through the use of waivers, states have changed long-term care nationally

for persons with developmental disabilities in two ways. First, states have

significantly expanded the number of individuals being served. Second,

states have shifted the program balance from serving most people through

the ICF/MR program to serving most through the waiver program. Generally

the shift to the waiver program has been part of an evolution of services

away from large and more restrictive settings to providing services in

small and less restrictive settings, which are preferred by recipients and

their families. Some state waiver programs are continuing to evolve from

their earlier approach of providing services primarily in group home

settings to one of serving people at home.

States Serve More People

and Shift Balance by

Serving More in Waiver

Than in ICF/MR Program

From 1990 to 1995 the number of persons served by the waiver and ICF/MR

programs combined rose at an average annual rate of 8 percent (see table

1). The number served by the waiver program more than tripled to over

142,000 persons during this period and accounted for the entire increase in

the number of persons served by both programs. States dramatically

increased the number of people who received waiver program services

using a variety of strategies, including substituting waiver program for

ICF/MR program services, services provided under state-only programs, and

services to persons who were not being served before.

5

Some states use the Medicaid optional service of rehabilitation to provide services to persons with

developmental disabilities. However, HCFA considers the services provided under this option for the

developmentally disabled population to be habilitation rather than rehabilitation because these

services are intended to help individuals learn to perform tasks rather than restore their ability to

perform tasks they have lost the capacity to perform. HCFA no longer allows states to select the

rehabilitation plan option to offer habilitation services. However, states that had received approval to

do so before June 30, 1989, can continue providing such services.

Page 6 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
B-266320 

Table 1: Growth of Developmental

Disabilities Population Served by

Medicaid Long-Term Care

Recipients 1982 1986 1990 1994 1995

Total 140,593 156,505 184,126 257,420 276,452

Served by waiver programa 1,381 17,180 39,838 115,302 142,068

Served by ICF/MR program 139,212 139,325 144,288 142,118 134,384

aDoes not include those served by Arizona’s 1115 waiver program who live in alternative settings.

Source: Research and Training Center on Community Living, Institute on Community

Integration/UAP, College of Education and Human Development, University of Minnesota,

Minneapolis.

More people are now served through the waiver program than the ICF/MR

program. Although the percentage of persons served through the waiver

program varies by state, 30 states provide services to more people through

the waiver program than the ICF/MR program (see fig. 1).

Page 7 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
B-266320 

Figure 1: States’ Use of Medicaid Waivers for Long-Term Care for Persons With Developmental Disabilities, 1995

Most Persons Served Through ICF/MR Program

Most Persons Served Through 1915 (c) Waiver Program

Most Persons Served Through 1115 Waiver Program

Source: Calculated from data obtained from the Research and Training Center on Community

Living, Institute on Community Integration/UAP, College of Education and Human Development,

University of Minnesota, Minneapolis.

With the support of recipients and their families, state officials have made

changes to serve more people through the waiver program. All three

Page 8 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
B-266320 

groups have come to believe that the alternatives possible through the

waiver can better serve persons with developmental disabilities. They

believe that in many cases individuals can have a higher quality of life

through greater community participation, including relationships with

neighbors, activities in social organizations, attendance at public events,

and shopping for food and other items. This can result in expanded social

networks, enhanced family involvement, more living space and privacy,

and improvements in communication, self-care, and other skills of daily

living.

States believed that they could use the waiver program to expand services

while simultaneously reducing or limiting access to ICF/MR program care as

a means to control growth in expenditures. As a result, many states have

closed large institutions or held steady ICF/MR capacity even as the

population in need has grown. Some states have also reduced smaller

ICF/MR settings by converting them to waiver programs. The number of

people in ICF/MR settings has dropped 7 percent from 1990 to 1995. These

actions have been part of an overall strategy to change the way services

are provided and financed.

Flexibility of the Waiver

Program Has Allowed

States to Pursue Distinct

Strategies

States have used the flexibility of the waiver program to pursue distinct

strategies and achieve different program results as shown in the three

states we visited (see table 2). These states used the waiver program to

substitute for ICFs/MR that were being closed, expand the number of

persons being served, or both.

Table 2: Changes in Number of Waiver

and ICF/MR Program Recipients, 1990

and 1994

1990 1994

State

Waiver

program

recipients

ICF/MR

program

recipients

Waiver

program

recipients

ICF/MR

program

recipients

Florida 2,488 3,243 6,547 3,395

Michigan 1,647 3,337 3,130 3,205

Rhode Island 738 903 1,262 458

Note: Some double counting occurs for recipient numbers because the same individual may

receive services through the waiver and ICF/MR programs in the same year.

Source: State agencies.

Rhode Island targeted waiver program services as a substitute for ICF/MR

program care with little change in the number of persons served. The state

Page 9 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
B-266320 

began the 1990s with short waiting lists for services and a goal of closing

all large institutions of 16 or more beds. Providing waiver program

services to many of its former residents, the state closed the Ladd Center,

its last large institution, in 1994 to become one of only two states along

with the District of Columbia to close all its large institutions.6

 Rhode

Island also substantially reduced the number of recipients of services in

smaller ICFs/MR by converting the ICFs/MR to the waiver program. As a

result, a substantial number of persons who had been supported through

the state’s ICF/MR program are now supported by its waiver program. The

number of developmentally disabled persons served through the waiver

and ICF/MR programs in Rhode Island, however, did not expand

significantly.

In contrast, Florida’s strategy for the waiver program was to expand

services to a much broader population rather than using the waiver

program to close ICF/MR settings. Florida began the 1990s with substantial

waiting lists for services and fewer ICF/MR beds than most of the country

relative to the size of the population with developmental disabilities.

Florida chose to greatly expand the number of persons with

developmental disabilities served to include people who had not been

served or who needed more services. The overwhelming source of growth

has been from the large increase in waiver program recipients, although

Florida has also experienced modest growth in the number of ICF/MR

recipients. The state’s increase in waiver program recipients includes

persons who were receiving services from state-only programs and

persons who were not previously served.

Michigan used the waiver program in the 1990s to continue pursuing its

goals of closing large institutions, offering placements for persons leaving

small ICFs/MR, and expanding services to those with unmet needs.

Michigan, like Florida, began the 1990s with many persons who needed

but had not received services. Michigan, however, had more ICF/MR

capacity than Florida. Most of Michigan’s ICF/MR capacity was in smaller

settings, many of which had been developed to help the state close some

of its large institutions. As a result, Michigan has closed all but about 400

beds in large institutions and significantly increased the number of

persons served. State officials told us that by 1995, Michigan was serving

more individuals in the waiver program than in its ICF/MR program.

6

Vermont is the other state to close all its ICFs/MR of 16 or more beds. New Hampshire is the only

other state to close all its large state institutions, but it still has one large private institution in

operation.

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States Are Changing Their

Waiver Programs to Serve

More Individuals at Home

In the continuing evolution of services for persons with developmental

disabilities, some states, such as Florida, Michigan, and Rhode Island, are

changing the focus of waiver program services from group home care to

more tailored services to meet individuals’ unique needs and preferences

at home. These states and most others began their waiver programs by

providing services primarily in group homes. Recently, state officials have

come to believe that for many persons, services are best provided on a

more individualized basis in a recipient’s home—his or her family’s home

or own home or an adult foster care home—rather than in group home

settings. The three states we visited became convinced that this was

possible even for persons with severe disabilities, in part, because of their

success in using this approach in the recently concluded Community

Supported Living Arrangements (CSLA) program.7

Slightly more than one-half of all waiver program recipients nationally are

estimated to have been living in settings other than group homes in 1995.8

In each of the three states we visited, many 1915(c) waiver recipients now

live in their family’s home or their own home. In Florida, more than

one-half of all waiver recipients live in settings other than group homes,

including nearly 50 percent who live in their family’s homes. The majority

of Michigan’s waiver program recipients live in small settings other than

licensed group homes. Just under one-half of Rhode Island’s recipients live

in settings other than group homes. Each state expects the percentage of

waiver program recipients living in nongroup home settings to increase.

Officials in the states we visited and other experts told us that serving

individuals with developmental disabilities who live in their own or their

family’s home and receive less than 24-hour support often requires

changes in the service delivery model. For example, these settings may

need environmental changes and supports to make them suitable for

persons with developmental disabilities. Such changes could include the

installation of ramps for persons with physical disabilities or emergency

communication technology and other equipment for persons with

communication or cognitive impairments or a history of seizures who may

need quick assistance. Paid assistance may also be needed to provide a

7

Starting in 1990, the Congress funded the CSLA program for a 5-year period. The eight states selected

to participate in the program used CSLA to expand or test a fundamentally different approach to

supporting people with disabilities in the community, often referred to as the supports model. The

program ended in 1995. CSLA expenditures were $38 million in 1995.

8

Robert Prouty, and and K. Charlie Lakin, eds., Residential Services for Persons With Developmental

Disabilities: Status and Trends Through 1995 (Minneapolis: University of Minnesota, Research and

Training Center on Community Living, Institute on Community Integration/UAP, College of Education

and Human Development, 1996), p. 102.

Page 11 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
B-266320 

variety of other services, such as supervision of or assistance in toileting,

dressing, bathing, carrying out routine chores, managing money, or

accessing public transportation and other community services. Assistance

for such services is often provided on an individual basis rather than for

several persons in a group home. Respite care may also be provided for

family caregivers.

Although the three states we visited have made major commitments to

convert their waiver programs to individualized supports at home, these

changes will require significant change on the part of everyone involved

and could take years to fully implement. For example, some public

agencies own or have long-term contracts for the use of group homes or

have encouraged the development of private group homes. In addition,

state officials told us that public agencies and other service providers may

find it difficult to adapt to designing services for each individual living at

home rather than offering services in the more familiar group home

program setting. In addition, some family members and advocates have

expressed concern that the level of funding available for and the range of

services offered under the waiver program may not be sufficient for

individuals who require constant supervision and care.

Medicaid Costs Rose

During Planned

Expansion in Persons

Served

Nationwide, Medicaid costs for long-term care services for persons with

developmental disability rose at an average annual rate of 9 percent

between 1990 and 1995 as states implemented their planned increases in

the number of persons served. Costs rose from $8.5 billion in 1990 to

$13.2 billion in 1995. (See table 3.) Most of the increase reflected increased

costs for waiver program services, but increased ICF/MR program costs also

were a factor. Waiver program costs grew primarily because more people

were served as per capita waiver costs increased slightly less than

inflation. ICF/MR program cost increases resulted solely from growth in per

capita ICF/MR program costs, which rose somewhat faster than inflation, as

the number of residents declined. In 1995, per capita waiver program costs

($24,970) remained significantly lower than per capita ICF/MR spending

($71,992).9

9

Although Medicaid costs are much lower for waiver program recipients than ICF/MR program

recipients, government savings are less for waiver program recipients than this comparison might

suggest. For example, waiver program recipients receive other government funding not available to

ICF/MR program recipients. Furthermore, although waiver program recipients can receive federal

Supplemental Security Income (SSI) payments for general income, ICF/MR program recipients can

only receive the SSI personal needs allowance. In 1995, the general income maximum was $458 a

month or $5,496 annually, while the personal needs allowance was $30 a month. The amount of SSI

payments can be greater if states choose to supplement the federal payment. Waiver program

recipients may also benefit from the Food Stamp program, some federal housing programs, and state

and local government programs.

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Table 3: Growth in Medicaid

Long-Term Care Costs for Persons

With Developmental Disabilities, 1990,

1994, and 1995

Dollars in billions

Program 1990 1994 1995

Total $8.478 $12.085 $13.222

Waiver programa 0.846 2.862 3.547

ICF/MR program 7.632 9.222 9.675

Note: Numbers may not add due to rounding.

aDoes not include costs for Arizona’s 1115 waiver program for services in alternative settings.

Source: Research and Training Center on Community Living, Institute on Community

Integration/UAP, College of Education and Human Development, University of Minnesota,

Minneapolis.

State Costs and Cost

Increases Vary

In the three states we visited, average per capita costs and average

increases in per capita costs varied according to each state’s waiver

program strategy and other factors (see table 4). Florida per capita waiver

costs, for example, were among the lowest in the nation, in part, as a result

of the state’s strategy to expand services to more persons. According to

state officials, limited resources were stretched to cover as many people

as possible by providing each individual with the level of services required

to prevent institutionalization rather than providing all the services from

which an individual might benefit.

Table 4: Per Capita Costs and Cost

Increases Vary

Per capita costs, 1994

Average annual percentage

increase in per capita costs,

1990-94

Waiver

program

ICF/MR

program

Waiver

program

ICF/MR

program

United States $24,824 $64,892 4 5

Florida 9,955 62,815 9 8

Michigan 27,537 66,361 5 1

Rhode Island 49,884 117,118 27 11

Source: Calculated from national data obtained from the Research and Training Center on

Community Living, Institute on Community Integration/UAP, College of Education and Human

Development, University of Minnesota, Minneapolis, and state data provided by state officials.

Because 1995 data were not available from the states, we use 1994 national data for comparison

purposes. See appendix I for details on national and state data comparison.

Page 13 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
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By contrast, from 1990 to 1994 Rhode Island’s per capita costs under the

waiver and ICF/MR programs were much higher than the national average.10

The large increase in per capita waiver program costs resulted because

unlike Florida and Michigan, Rhode Island substituted waiver program

services for persons receiving high-cost ICF/MR care and closed its last large

institution. As a result, Rhode Island was serving a substantial number of

persons through the waiver program who had previously received

expensive ICF/MR care. At the same time, ICF/MR per capita costs were also

higher, in part, because as the number of people in ICF/MR settings

declined, the fixed costs were spread over a smaller population. In

addition, the population that remained in ICF/MR settings was substantially

disabled and required intensive services.

Enrollment Caps and

Management

Practices Helped

Limit Cost Growth

Cost growth has been limited by two factors. First is a cap on the number

of program recipients. Second, states have employed a variety of

management practices to control per capita spending.

Fundamental to waiver program cost control has been the federal

Medicaid rule which, in effect, capped the number of recipients who could

have been served each year. HCFA approves each state’s cap, and states are

allowed to deny admission for services to otherwise qualified individuals

when the cap is reached. By contrast, under the regular Medicaid program,

all eligible recipients must be served and no limits exist on the number of

recipients. As a result, waiver caps have given states a greater ability to

control access and thereby cost growth than would have been possible if

they had expanded services through the regular Medicaid program.

States have also used several management practices to help contain costs.

In the three states we visited, these management practices include fixed

agency budgets for waiver services and linking management of care plan

and use of non-Medicaid services to individual budgets for each person

served.

Fixed Agency Budgets States have developed fixed agency budgets within limits established

under waiver rules. In Florida, Michigan, and Rhode Island, appropriations

for waiver program and other services are in the budgets of developmental

disability agencies. In Florida, budgets are allocated among 15 state

district offices. In Michigan, budgets for serving persons with

10Per capita costs for both programs are substantially higher in New England than in most other parts

of the country.

Page 14 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
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developmental disabilities are allocated among 52 local government

community mental health boards and three state-operated agencies, each

responsible for serving a local area. State or local agencies are responsible

for approving individual service plans, authorizing budgets for the costs of

these services, and monitoring program expenditures on an ongoing basis

to ensure that total expenditures are within appropriated budgetary

amounts as the three states transition to a person-centered planning basis

in their waiver programs.

Management of Care Plan

Linked to Individual

Budgets

The three states we visited require that case managers or service providers

in consultation with case managers develop a plan of care linked to an

individual budget for each person being served in the person-centered

planning approach. This care plan and its costs must be approved by the

state developmental disability agency, state district office, or community

mental health board, depending upon the state. Upon agency approval, the

case manager oversees the implementation of the care plan and monitors

it on an ongoing basis. Significant variation from the plan requires agency

approval and changes in service and budget authorizations. This process

provides more stability for the budget process and allows state agencies to

monitor their overall spending on an ongoing basis and plan for

contingencies to remain within budget levels.

Use of Non-Medicaid

Services Linked to

Individual Budgets

State developmental disability agencies in the three states we visited also

require that case managers build into the care planning process and

individual budget determination the use of non-Medicaid services, both

paid and unpaid. State officials told us that this is a part of better

integration of persons with developmental disabilities into the community

and making it possible to extend available waiver dollars to serve as many

people as possible. When paid services are needed, states try to take

advantage of services funded for broader populations, such as recreation

or socialization in senior citizen centers or the use of public

transportation. States also attempt to use unpaid services when possible

by increasing assistance from families, friends, and volunteers. State

officials told us that use of these paid and unpaid services reduces the

need for Medicaid-financed supervision and care.

Page 15 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
B-266320 

Change in Federal

Rule Could Result in

Higher Caps and

Costs

A change in federal rules could result in high waiver caps on enrollment

and therefore higher costs. Until August 24, 1994, HCFA limited the number

of waiver recipients in a state under the so-called cold bed rule. This rule

required that each state document for HCFA approval that it either had an

unoccupied Medicaid-certified institutional bed—or a bed that would be

built or converted—for each individual waiver recipient the state

requested to serve in its application. However, in 1994, HCFA eased waiver

restrictions by eliminating the cold bed rule so that states were no longer

required to demonstrate to HCFA that they had “cold beds.”

HCFA took this action because it believed that the cold bed rule placed an

unreasonable burden on states by requiring them to project estimates of

additional institutional capacity. HCFA now accepts a state’s assurance that

absent the waiver the people served in the waiver program would receive

appropriate Medicaid-funded institutional services. As HCFA recognized

when it eliminated the cold bed rule, this change could result in higher

waiver costs if states elect to increase the number of waiver recipients

more rapidly than before. HCFA, however, recognized that the state budget

constraints could play a restrictive role in waiver growth.

State officials told us that elimination of the cold bed rule allows them to

expand waiver services more rapidly than in the past, both to persons not

currently receiving services and to others receiving services from

state-only programs. State officials told us that converting state program

recipients to the waiver was particularly advantageous given the federal

Medicaid match.11 Officials in Florida and Michigan told us that they are

planning to expand the number of people served in the waiver program

more rapidly than they could have under the cold bed rule. This could

increase costs more rapidly than in the past. Officials in Florida and

Michigan said that they will phase in increases in the number of waiver

recipients to stay within state budget constraints and to allow for a more

orderly expansion of services to the larger numbers of new recipients.

11The federal government matches state expenditures for Medicaid according to a prescribed formula,

providing on average 57 cents of every Medicaid dollar spent.

Page 16 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
B-266320 

More Development of

Promising Quality

Assurance

Approaches Needed

to Reduce Potential

Risks

To increase quality for recipients and families, states are introducing

promising quality assurance innovations while simultaneously building in

more flexibility in traditional quality assurance mechanisms. These

changes are intended to provide recipients and families with a greater

choice of services within appropriate budget and safety limits. However,

until states more comprehensively develop and test these approaches,

some recipients may face health and safety risks and others may not have

access to the range of choices state programs seek to provide.

States Continue to Use

Traditional Mechanisms to

Assure Adequate Quality

One of the most important mechanisms that states use to assure adequate

quality is service standards. Each state, as required by HCFA guidelines,

adopts or develops standards for each waiver service. Waiver standards

are specified in state and local laws, regulations, or operating guidelines

and are enforced by specific agencies. As a result, waiver standards reflect

specific state processes and choices in how states assure quality, and are

not uniform across the nation as are ICF/MR standards. (For example, see

app. IV for a summary of how Florida meets HCFA requirements for

specifying waiver standards.) Waiver standards may include professional

licensing standards, minimum training requirements for staff, and criminal

background checks for providers. The standards may also include

requirements for certification of group home or other facilities and

compliance with local building codes and fire and safety requirements.

States review providers and services on an ongoing basis and have abuse

and neglect reporting procedures in place. Florida, Michigan, and Rhode

Island, for example, conduct routine and unannounced reviews of

providers. As a result of these reviews, providers can be required to

provide plans of correction for identified problems and implement

improvements. In some cases, providers have lost their certification to

participate in the program. These states also have formal grievance

procedures and a grievance unit, such as a state agency or human rights

committee, to investigate complaints on a statewide, regional, or agency

basis. Through these processes, the states have also identified problems in

quality and taken steps to ensure corrective action.

In addition to state quality assurance efforts, HCFA regional staff conduct a

compliance review of each state’s waiver program before its renewal. HCFA

uses a compliance review document for this process. HCFA reviews involve

random selections of recipients for interviews and visits to their homes.

The reviews also involve interviews with and visits to service providers

Page 17 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
B-266320 

and advocates. If HCFA determines that quality is not satisfactory, it can

require that a state take corrective action before a waiver can be renewed.

States Are Introducing

Innovations to Promote

Better Quality for

Recipients

States are taking steps to develop or enhance existing mechanisms to

promote better quality in waiver program services. Many of these

mechanisms were used in the recently concluded CSLA program to provide

individualized services to people at home and are now being incorporated

into the home and community-based waiver program even for persons

with substantial disabilities. Advocates, family members, and recipients

have been generally positive about this shift to support individuals in more

integrated community settings.

Person-centered planning is a key element of providing better quality in

waiver services, according to officials in the three states we visited and

national experts. The planning process and the resulting plans are

individualized to incorporate substantial recipient and family input on how

the individual will live and what assistance the individual will need. The

case manager, called support coordinator in some states, has primary

responsibility in person-centered planning, which includes working with

the recipient to develop the plan, arranging for needed services,

monitoring service delivery and quality, and revising the plan as necessary.

A budget for the individual is established to provide the services identified

as appropriate and cost-effective. Recipients and case managers choose

providers on the basis of their satisfaction with services. State officials

told us that this approach not only gives recipients more say in how they

are served but that the resulting competition motivates providers to

increase service quality.

Linking persons living in the community with volunteers who can provide

assistance and serve as advocates is seen as another important mechanism

for promoting quality. For example, some states, including the three we

visited, have a circle of friends or similar process for individual recipients.

A circle of friends is a group of volunteers, which can include family,

friends, community members, and others, who meet regularly to help

persons with disabilities reach their goals. These volunteers help plan how

to obtain needed supports; help persons participate in community, work,

or leisure activities they choose; and try to help find solutions to problems.

By integrating recipients in the community, recipients have more choice

and can get better quality services, according to national experts and state

officials we interviewed. This community integration increases the number

Page 18 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
B-266320 

of persons who can observe and identify problems in service quality and

notify appropriate officials when there are deficiencies.

Because program quality depends on the active participation of recipients,

families, and service providers, states are also providing substantial

training to these groups to encourage and strengthen their participation.

Training can include informing recipients and families of available service

providers, procedures for providing feedback about services, and steps to

take if quality is not improved. Training for service providers may focus on

reinforcing the fact that the recipient and family have the right to make

choices about services and that staff must be responsive to those choices

unless they are inappropriate for safety concerns or for other compelling

reasons, such as available financial resources.

States are also modifying how they monitor quality. Traditionally, they

emphasized compliance with certain criteria, such as maintaining a

minimum level of staff resources and implementing standard care

processes. Some states are focusing their quality monitoring more on

outcome measures for each individual while still assessing providers’

compliance with program standards. For example, states, including the

three we visited, are trying to determine whether the recipients are living

where and with whom they chose, whether they are safe in this

environment, and whether they are satisfied with their environment and

the services they receive.

States are also attempting to make their oversight less intrusive for the

recipients. For example, some states use trained volunteers to interview

recipients at their homes on a periodic basis to check the quality of

services received. In other instances, although case managers are required

to meet recipients on a regular basis, meetings can be arranged at the

recipient’s convenience, including in the evening or on weekends or at a

place the recipient likes to meet at, such as at his or her home or local

park or library. Case managers talk with the recipients and their families

about the quality of the services they receive and take any actions

necessary to correct deficiencies.

Some Recipients May Face

Avoidable Risks Until

States More Fully Develop

and Implement Evolving

Approaches to Quality

While officials in the three states we visited and other experts agree that

many persons prefer services provided at home to services provided in

institutions or other group settings, they also note that providing services

at home presents unique problems in ensuring quality. Because the new

focus is on providing individual choice, the types of services that are

Page 19 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
B-266320 

offered and the means for providing these services can vary greatly. To

promote quality and ensure that minimum standards are met requires a

broad range of approaches.

Although states continue to develop quality assurance mechanisms, state

officials acknowledge that these are not yet comprehensive enough to

assure recipient satisfaction and safety. In the three states we visited, state

officials and provider agencies told us that they are still developing

guidance and oversight in a number of key areas. Michigan, for example, is

revising its case management standards and statewide quality assurance

approaches. Rhode Island is developing a more systematic monitoring

approach statewide, and Florida is continuing to implement and evaluate

its independent service coordinator approach.

One of the greatest difficulties in developing quality mechanisms for

services in alternative settings is balancing individual choice and risks.12

Where greater choice is encouraged and risks are higher, more frequent

monitoring and contingency planning need to be built into the process. Yet

some professional staff and agency providers in the states we visited

believe that they do not have sufficient guidance on where to draw the line

between their assessment of what is appropriate for the disabled person

and the individual’s choice. For example, some persons with mental

retardation cannot speak clearly enough to be understood by people who

do not know them; cannot manage household chores, such as cooking in a

safe manner; or have no family member to perform overall supervision to

keep them from danger. Yet these people express a desire to live

independently, without 24-hour staff supervision.

Florida, Michigan, and Rhode Island each attempt to customize supports

to reduce risks for individuals who live in these situations. They may

arrange for roommates, encourage frequent visits and telephone contact

by neighbors and friends, enroll individuals in supervised day activities,

install in-home electronic access to emergency help, and provide paid

meal preparation and chore services. As this new process evolves, states

and providers seek to develop a better understanding of how to manage

risks and reduce them where possible. This should lead to improved

guidance for balancing risks and choices for each recipient’s unique

circumstances.

12HCFA has also recognized the need to balance these issues. See The Role of Medicare and Medicaid

in Long-Term Care: Opportunities, Challenges, and New Directions (Baltimore: U.S. Department of

Health and Human Services, HCFA, Sept., 1995), p. 44.

Page 20 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
B-266320 

Determining what recipients’ choices are can be difficult for a number of

reasons. First, many of these individuals have had little experience in

making decisions and may also have difficulty in communicating. In

addition, some recipients have complained that they are not being

provided the range of choices to which they should have access and that

quality monitoring is too frequent or intrusive despite the changes states

have introduced. However, concern has been expressed that quality

assurance is not rigorous enough to reduce all health or safety risks and

that the range of choices is too great for some individuals.13

State officials and other experts we interviewed have emphasized the need

for vigilance to protect recipients and ensure their rights. They have been

especially concerned with assuring quality for recipients who are unable

to communicate well and for those who do not have family members to

assist them. The states we visited are taking special precautions to try to

assure quality in these cases—such as recruiting volunteers to assist and

asking recipient groups to suggest how to assure quality for this vulnerable

population. However, state officials and HCFA agree that more development

of quality assurance approaches is needed.

Agency Comments Officials from the Office of Long-Term Care Services in HCFA’s Medicaid

Bureau and from Florida, Michigan, and Rhode Island reviewed a draft of

this report. They generally agreed with its contents and provided technical

comments that we incorporated as appropriate.

13See Robert G. Erb, “Perspectives: Where, Oh Where, Has Common Sense Gone? (Or If the Shoe Don’t

Fit, Why Wear It?), Mental Retardation: A Journal of Policy, Practices, and Perspectives, Vol. 33, No. 3

(1995), pp. 197-99.

Page 21 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
B-266320 

We are sending copies of this report to the Secretary of Health and Human

Services; the Administrator, Health Care Financing Administration; and

other interested parties. Copies of this report will also be made available

to others upon request.

If you or your staff have any questions, please call me at (202) 512-7119;

Bruce D. Layton, Assistant Director, at (202) 512-6837; or James C.

Musselwhite, Senior Social Science Analyst, at (202) 512-7259. Other major

contributors to this report include Carla Brown, Eric Anderson, and

Martha Grove Hipskind.

William J. Scanlon

Director, Health Systems Issues

Page 22 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Page 23 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Contents

Letter 1

Appendix I 

Scope and

Methodology

26

Appendix II 

Medicaid Waiver

Program Services

Offered for Persons

With Developmental

Disabilities in Florida,

Michigan, and Rhode

Island

29

Appendix III 

Standard Services as

Defined in HCFA’s

1915(c) Waiver

Application Format

32

Appendix IV 

Licensure,

Certification, and

Other Standards for

Waiver Program

Services

38

Related GAO Products 48

Tables Table 1: Growth of Developmental Disabilities Population Served

by Medicaid Long-Term Care

7

Page 24 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Contents

Table 2: Changes in Number of Waiver and ICF/MR Program

Recipients, 1990 and 1994

9

Table 3: Growth in Medicaid Long-Term Care Costs for Persons

With Developmental Disabilities, 1990, 1994, and 1995

13

Table 4: Per Capita Costs and Cost Increases Vary 13

Figures Figure 1: States’ Use of Medicaid Waivers for Long-Term Care for

Persons With Developmental Disabilities, 1995

8

Figure II.1: Waiver Program Services Provided in Florida, Rhode

Island, and Michigan

30

Abbreviations

ASPE Assistant Secretary for Planning and Evaluation

CMHB Community Mental Health Board

CSLA Community Supported Living Arrangements

DS Developmental Services

F.S. Florida statutes

HCFA Health Care Financing Administration

HIV/AIDS human immunodeficiency virus/acquired

immunodeficiency syndrome

HRS Department of Health and Rehabilitative Services

ICF intermediate care facility

ICF/MR intermediate care facility for mental retardation

NASDDDS National Association of State Directors of Developmental

Disabilities Services, Inc.

NF nursing facility

PERS Personal Emergency Response System

SNF skilled nursing facility

SSI Supplemental Security Income

UAP University Affiliated Program

Page 25 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Appendix I 

Scope and Methodology

We focused our work on Medicaid 1915(c) waivers for adults with

developmental disabilities. We also examined related aspects of

institutional care provided through ICF/MR, state plan optional services, and

the CSLA program, all under Medicaid.

To address our study objectives we (1) conducted a literature review,

(2) interviewed national experts on mental retardation and other

developmental disabilities, (3) collected national data on expenditures and

the number of individuals served, and (4) collected and analyzed data from

three states. National experts interviewed included officials at HCFA; the

Office of the Assistant Secretary for Planning and Evaluation (ASPE) in the

Department of Health and Human Services; the Administration on

Developmental Disabilities; the President’s Committee on Mental

Retardation; the National Association of Developmental Disabilities

Councils; the Administration on Aging; the National Association of State

Directors of Developmental Disabilities Services, Inc. (NASDDDS); and the

ARC, formerly known as the Association for Retarded Citizens. We also

interviewed researchers at University Affiliated Programs (UAP)14 on

developmental disabilities at the Universities of Illinois and Minnesota and

Wayne State University.

We conducted our case studies in Florida, Michigan, and Rhode Island. We

chose these states for several reasons. The three states provide a range of

state size and geographic representation. Each state has a substantial

developmental disability waiver program that serves more people than its

ICF/MR program. Experts told us that these states would provide examples

of different state strategies for utilizing the Medicaid waiver. This included

their policies regarding large and small institutions as well as the design

and implementation of their waiver programs. The three states also have

important differences in the administrative structure of their

developmental disability programs. Rhode Island administers its waiver

program statewide through the Division of Developmental Disabilities in

the Department of Mental Health, Retardation and Hospitals. Florida

places statewide administration and oversight responsibility for its waiver

program in Developmental Services, the Department of Health and

Rehabilitative Services, but operational responsibility rests with its 15

district offices of Developmental Services. Michigan places statewide

administration and oversight responsibility for its waiver programs in the

state Department of Mental Health, but operating responsibilities rest with

52 Community Mental Health Boards (CMHB), which are local government

14University affiliated programs are funded by the Administration on Developmental Disabilities as part

of the Developmental Disabilities Act to provide information and analysis on developmental disability

programs.

Page 26 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Appendix I 

Scope and Methodology

entities covering one or more counties and three state-operated agencies

each responsible for serving a local area. Florida district offices and

Michigan CMHBs have discretion in the design and implementation of

waiver program and other services within the broad outlines of state

policy.

We visited each state to conduct interviews with state and local officials,

researchers, service providers, advocates, families, and recipients. These

interviews included state Medicaid officials and developmental services

officials and officials in agencies on aging and developmental disability

councils. In Florida, we also visited state district offices in Pensacola and

Tallahassee to conduct interviews with district government and

nongovernment representatives. In Michigan, we visited the Detroit-Wayne

and Midland/Gladwin CMHBs to conduct interviews with government and

nongovernment representatives. We followed up with state agencies to

collect additional information.

The national waiver and ICF/MR program expenditure and recipient data

used in this report are from the UAP on developmental disabilities at the

Research and Training Center on Community Living, Institute on

Community Integration, at the University of Minnesota. The Institute

collects these data, with the exception of ICF/MR expenditures, directly

from state agencies. The Institute uses ICF/MR expenditure data, compiled

by the Medstat Group under contract to HCFA. National data from the

Institute were available through 1995. The expenditure and recipient data

we report for Florida, Michigan, and Rhode Island were provided to us by

the state agencies responsible for developmental services and the

Medicaid agencies. The latest complete data available from these three

states were for 1994. We therefore used 1994 national data for comparison

purposes.

Some differences occur in the recipient counts among the national data we

used from the Institute and data we collected from agencies in Florida,

Michigan, and Rhode Island. These differences could affect some aspects

of our comparisons of national trends and trends in the three states.

Institute data on recipients show the total number of persons receiving

services on a given date—June 30 of each year—whereas data for the

three states show the cumulative number of persons receiving services

over a 12-month period. Therefore, data supplied by the states could result

in a larger count of program recipients than the methodology used by the

Institute. This could have the impact of making per capita expenditure

calculations smaller for the state data than for the national data. Our

Page 27 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Appendix I 

Scope and Methodology

comparisons of data from the two sources, however, showed few

substantial differences in the data for the three states.

We excluded children from our analysis because (1) their needs are

different in many respects from those of adults, (2) family responsibilities

for the care of children are more comprehensive than for adults, and

(3) the educational system has the lead public responsibility for services

for children. Recipient and expenditure data in this report, however,

include some children because it was not possible to systematically

exclude them. However, the percentage of children in these services is

small. In 1992, for example, about 11 percent of ICF/MR service recipients

were less than 21 years old.15

We conducted our review from May 1995 through May 1996 in accordance

with generally accepted government auditing standards.

15Robert Prouty, and K. Charlie Lakin, eds., Residential Services for Persons with Developmental

Disabilities: Status and Trends Through 1994 (Minneapolis: University of Minnesota, Research and

Training Center on Community Living, Institute on Community Integration/UAP, The College of

Education and Human Development, 1995), p. 113.

Page 28 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Appendix II 

Medicaid Waiver Program Services Offered

for Persons With Developmental Disabilities

in Florida, Michigan, and Rhode Island

States, with HCFA’s approval, choose which services they offer through

waiver programs and how the services are defined. States can choose from

a list of standard services and definitions in the HCFA waiver application or

design their own services. In designing their own services, states can add

new services or redefine standard services. States can also extend optional

services to offer more units of these services to waiver program recipients

than are available to other recipients under the regular Medicaid program.

The three states we visited chose to offer a number of standard services

under their waiver program. Each state also modified the definition of

some standard services that it provides or offered services not on the

standard waiver list. (See fig II.1.) For example, Florida modified the

definition of case management to include helping individuals and families

identify preferences for services. Florida also added several nonstandard,

state-defined services such as behavior analysis and assessments and

supported living coaching. Rhode Island’s modified definition of

homemaker services includes a bundle of services often offered

separately, including standard homemaker services, personal care

services, and licensed practical nursing services. Rhode Island also added

nonstandard services to provide minor assistive devices and support of

family living arrangements. Michigan modified the standard definition of

environmental accessibility adaptations to include not only physical

adaptations to the home, but to the work environment as well. Michigan

also recently added a new state-defined service, community living

supports, which is a consolidation of four services—in-home habilitation,

enhanced personal care, personal assistance, and transportation—

previously provided separately. Florida and Michigan also chose to offer

several optional services in their waiver programs.

Page 29 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Appendix II 

Medicaid Waiver Program Services Offered

for Persons With Developmental Disabilities

in Florida, Michigan, and Rhode Island

Figure II.1: Waiver Program Services Provided in Florida, Rhode Island, and Michigan

Nonstandard Waiver Services Provided by States

Behavior Analysis and Assessments

Community Living Supports

Day Training

Family Living Arrangements

Minor Assistive Devices

Nonresidential Support

Psychological Services

Special Medical Home Care

Specialized Homemaker

Supported Living Coaching

Extensions of State Plan Optional Services

Dental

Enhanced Medical Equipment and

Supplies

Occupational Therapy

Physical Therapy

Prescribed Drugs

Speech Therapy

Services Used From Standard Waiver List

Adult Companion Services

Case Management

Chore Services

Day Habilitation

Educational Services

Environmental Accessibility

Adaptations

Family Training

Homemaker

Personal Care Services

Personal Emergency Response

System (PERS)

Prevocational Services

Private Duty Nursing

Residential Habilitation

Respite Care

Skilled Nursing

Specialized Medical Equipment and

Supplies

Supported Employment Services

Transportation

Florida

Rhode Island

Michigan

Florida

Rhode Island

Michigan

Service Offered

State Definition Differs From Standard HCFA Definition

a

Page 30 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Appendix II 

Medicaid Waiver Program Services Offered

for Persons With Developmental Disabilities

in Florida, Michigan, and Rhode Island

aRhode Island’s definition of homemaker includes not only homemaker services as typically

defined, but personal care and licensed practical nursing services as well.

Source: HCFA 1915(c) Waiver Application Format (June 1995) and state waiver applications.

The HCFA definition for each standard waiver service offered in Florida,

Michigan, and Rhode Island is shown in appendix III.

Page 31 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Appendix III 

Standard Services as Defined in HCFA’s

1915(c) Waiver Application Format

This appendix shows HCFA’s definition for each standard waiver service

offered in Florida, Michigan, and Rhode Island. These service names and

definitions are written as they appear in the latest version of the HCFA

1915(c) waiver application format, dated June 1995. Because states have

the flexibility to modify these definitions, the definitions and how services

are implemented vary among the states.

Page 32 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Appendix III 

Standard Services as Defined in HCFA’s

1915(c) Waiver Application Format

Adult Companion Services: Non-medical care, supervision and

socialization, provided to a functionally impaired adult.

Companions may assist or supervise the individual with such tasks

as meal preparation, laundry and shopping, but do not perform these

activities as discrete services. The provision of companion

services does not entail hands-on nursing care. Providers may also

perform light housekeeping tasks which are incidental to the care

and supervision of the individual. This service is provided in

accordance with a therapeutic goal in the plan of care, and is not

purely diversional in nature.

Case Management: Services which will assist individuals who

receive waiver services in gaining access to needed waiver and

other State plan services, as well as needed medical, social,

educational and other services, regardless of the funding source

for the services to which access is gained.

Chore Services: Services needed to maintain the home in a clean,

sanitary and safe environment. This service includes heavy

household chores such as washing floors, windows and walls, tacking

down loose rugs and tiles, moving heavy items of furniture in order

to provide safe access and egress. These services will be provided

only in cases where neither the individual, nor anyone else in the

household, is capable of performing or financially providing for

them, and where no other relative, caregiver, landlord,

community/volunteer agency, or third party payor is capable of or

responsible for their provision. In the case of rental property,

the responsibility of the landlord, pursuant to the lease

agreement, will be examined prior to any authorization of service.

Environmental accessibility adaptations: Those physical

adaptations to the home, required by the individual’s plan of care,

which are necessary to ensure the health, welfare and safety of the

individual, or which enable the individual to function with greater

independence in the home, and without which, the individual would

require institutionalization. Such adaptations may include the

installation of ramps and grab-bars, widening of doorways,

modification of bathroom facilities, or installation of specialized

electric and plumbing systems which are necessary to accommodate

the medical equipment and supplies which are necessary for the

welfare of the individual. Excluded are those adaptations or

improvements to the home which are of general utility, and are not

of direct medical or remedial benefit to the individual, such as

carpeting, roof repair, central air conditioning, etc. Adaptations

which add to the total square footage of the home are excluded from

this benefit. All services shall be provided in accordance with

applicable State or local building codes.

Family Training: Training and counseling services for the families

of individuals served on this waiver. For purposes of this

service, "family" is defined as the persons who live with or

provide care to a person served on the waiver, and may include a

parent, spouse, children, relatives, foster family, or in-laws.

"Family" does not include individuals who are employed to care for

Page 33 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Appendix III 

Standard Services as Defined in HCFA’s

1915(c) Waiver Application Format

the consumer. Training includes instruction about treatment

regimens and use of equipment specified in the plan of care, and

shall include updates as necessary to safely maintain the

individual at home. All family training must be included in the

individual’s written plan of care.

Habilitation: Services designed to assist individuals in

acquiring, retaining and improving the self-help, socialization and

adaptive skills necessary to reside successfully in home and

community-based settings. This service includes:

-- Residential habilitation: Assistance with acquisition,

retention, or improvement in skills related to activities of

daily living, such as personal grooming and cleanliness, bed

making and household chores, eating and the preparation of food,

and the social and adaptive skills necessary to enable the

individual to reside in a non-institutional setting. Payments

for residential habilitation are not made for room and board,

the cost of facility maintenance, upkeep and improvement, other

than such costs for modifications or adaptations to a facility

required to assure the health and safety of residents, or to

meet the requirements of the applicable life safety code.

Payment for residential habilitation does not include payments

made, directly or indirectly, to members of the individual’s

immediate family. Payments will not be made for the routine

care and supervision which would be expected to be provided by a

family or group home provider, or for activities or supervision

for which a payment is made by a source other than Medicaid.

-- Day habilitation: Assistance with acquisition, retention, or

improvement in self-help, socialization and adaptive skills

which takes place in a non-residential setting, separate from

the home or facility in which the individual resides. Services

shall normally be furnished 4 or more hours per day on a

regularly scheduled basis, for 1 or more days per week unless

provided as an adjunct to other day activities included in an

individual’s plan of care. Day habilitation services shall

focus on enabling the individual to attain or maintain his or

her maximum functional level and shall be coordinated with any

physical, occupational, or speech therapies listed in the plan

of care. In addition, they may serve to reinforce skills or

lessons taught in school, therapy, or other settings.

-- Prevocational services not available under a program funded

under section 110 of the Rehabilitation Act of 1973 or section

602(16) and (17) of the Individuals with Disabilities Education

Act (20 U.S.C. 1401 (16 and 17)). Services are aimed at

preparing an individual for paid or unpaid employment, but are

not job-task oriented. Services include teaching such concepts

as compliance, attendance, task completion, problem solving and

safety. Prevocational services are provided to persons not

expected to be able to join the general work force or

participate in a transitional sheltered workshop within one year

(excluding supported employment programs). Prevocational

Page 34 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Appendix III 

Standard Services as Defined in HCFA’s

1915(c) Waiver Application Format

services are available only to individuals who have previously been

discharged from a SNF [skilled nursing facility], ICF [intermediate

care facility], NF [nursing facility] or ICF/MR [intermediate care

facility for mental retardation]. Activities included in this

service are not primarily directed at teaching specific job skills,

but at underlying habilitative goals, such as attention span and

motor skills. All prevocational services will be reflected in the

individual’s plan of care as directed to habilitative, rather than

explicit employment objectives.

-- Educational services, which consist of special education and

related services as defined in sections (15) and (17) of the

Individuals with Disabilities Education Act, to the extent to

which they are not available under a program funded by IDEA.

-- Supported employment services, which consist of paid employment

for persons for whom competitive employment at or above the

minimum wage is unlikely, and who, because of their

disabilities, need intensive ongoing support to perform in a

work setting. Supported employment is conducted in a variety of

settings, particularly work sites in which persons without

disabilities are employed. Supported employment includes

activities needed to sustain paid work by individuals receiving

waiver services, including supervision and training. When

supported employment services are provided at a work site in

which persons without disabilities are employed, payment will be

made only for the adaptations, supervision and training required

by individuals receiving waiver services as a result of their

disabilities, and will not include payment for the supervisory

activities rendered as a normal part of the business setting.

Supported employment services furnished under the waiver are not

available under a program funded by either the Rehabilitation

Act of 1973 or P.L. 94-142.

Homemaker: Services consisting of general household activities

(meal reparation and routine household care) provided by a trained

homemaker, when the individual regularly responsible for these

activities is temporarily absent or unable to manage the home and

care for him or herself or others in the home. Homemakers shall

meet such standards of education and training as are established by

the State for the provision of these activities.

Personal care services: Assistance with eating, bathing, dressing,

personal hygiene, activities of daily living. This service may

include assistance with preparation of meals, but does not include

the cost of the meals themselves. When specified in the plan of

care, this service may also include such housekeeping chores as

bedmaking, dusting, and vacuuming, which are incidental to the care

furnished, or which are essential to the health and welfare of the

individual, rather than the individual’s family. Personal care

providers must meet State standards for this service.

Personal Emergency Response Systems (PERS): PERS is an electronic

device which enables certain individuals at high risk of

Page 35 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Appendix III 

Standard Services as Defined in HCFA’s

1915(c) Waiver Application Format

institutionalization to secure help in an emergency. The

individual may also wear a portable "help" button to allow for

mobility. The system is connected to the person’s phone and

programmed to signal a response center once a "help" button is

activated. The response center is staffed by trained

professionals. PERS services are limited to those individuals who

live alone, or who are alone for significant parts of the day, and

have no regular caregiver for extended periods of time, and who

would otherwise require extensive routine supervision.

Private duty nursing: Individual and continuous care (in contrast

to part time or intermittent care) provided by licensed nurses

within the scope of State law. These services are provided to an

individual at home.

Respite care: Services provided to individuals unable to care for

themselves; furnished on a short-term basis because of the absence

or need for relief of those persons normally providing the care.

Skilled nursing: Services listed in the plan of care which are

within the scope of the State’s Nurse Practice Act and are provided

by a registered professional nurse, or licensed practical or

vocational nurse under the supervision of a registered nurse,

licensed to practice in the State.

Specialized Medical Equipment and Supplies: Specialized medical

equipment and supplies include devices, controls, or appliances,

specified in the plan of care, which enable individuals to increase

their abilities to perform activities of daily living, or to

perceive, control, or communicate with the environment in which

they live. This service also includes items necessary for life

support, ancillary supplies and equipment necessary to the proper

functioning of such items, and durable and non-durable medical

equipment not available under the Medicaid State plan. Items

reimbursed with waiver funds shall be in addition to any medical

equipment and supplies furnished under the State plan and shall

exclude those items which are not of direct medical or remedial

benefit to the individual. All items shall meet applicable

standards of manufacture, design, and installation.

Transportation: Service offered in order to enable individuals

served on the waiver to gain access to waiver and other community

services, activities and resources, specified by the plan of care.

This service is offered in addition to medical transportation

required under 42 CFR 431.53 and transportation services under the

State plan, defined at 42 440.170(a) (if applicable), and shall not

replace them. Transportation services under the waiver shall be

offered in accordance with individual’s plan of care. Whenever

possible, family neighbors, friends, or community agencies which

can provide this service without charge will be utilized.

Extended State plan services: The following services, available

through the approved State plan, will be provided, except that the

limitations on amount, duration and scope specified in the plan

Page 36 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Appendix III 

Standard Services as Defined in HCFA’s

1915(c) Waiver Application Format

will not apply. Services will be as defined and described in the

approved State plan. The provider qualifications listed in the

plan will apply, and are hereby incorporated into this waiver

request by reference. These services will be provided under the

State plan until the plan limitations have been reached.

-- Physical therapy services

-- Occupational therapy services

-- Speech, hearing and language services

-- Prescribed drugs

-- Other State plan services

Page 37 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Appendix IV 

Licensure, Certification, and Other

Standards for Waiver Program Services

HCFA requires that each state specify licensure, certification, or other

standards for each service in its waiver application. These requirements

are detailed in state and local laws, regulations, or operating guidelines

and enforced by state and local agencies. Such requirements may include

professional standards for individuals providing services, minimum

training requirements, criminal background checks, certification for

facilities, local building codes, and fire and health requirements. For

example, the information below shows how Florida addresses HCFA

requirements for licensure, certification, and other standards for each of

its waiver program services. The information, unless otherwise noted, was

obtained from Florida’s Department of Health and Rehabilitative Services’

July 1995 Services Directory, which provides the details of service

standards in Florida’s approved waiver.16

Services

Behavioral Analysis and

Assessment

Provider Types Psychologists, clinical social workers, marriage and family therapists,

mental health counselors, or providers certified by the Department of

Health and Rehabilitative Services (HRS) Developmental Services (DS)

Behavior Analysis Certification program.

Licensure/Registration Psychologists shall be licensed by the Department of Business and

Professional Regulation in accordance with Chapter 490, Florida statutes

(F.S.). Clinical social workers, marriage and family therapists, and mental

health counselors shall be licensed in accordance with Chapter 491, F.S.

Others must be certified under the HRS Behavior Analysis Certification

program.

Other Standards Background screening is required for those certified under the HRS

Developmental Services Behavior Analysis Certification program.

16All providers of Developmental Services (DS) waiver services must be certified by the district level

Department of Health and Rehabilitative Services (HRS) DS program office.

Page 38 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Appendix IV 

Licensure, Certification, and Other

Standards for Waiver Program Services

Chore

Provider Types Home health agencies, hospice agencies, and independent vendors.

Licensure/Registration Home health and hospice agencies must be licensed by the Agency for

Health Care Administration. In accordance with Chapter 400, Part IV or

Part VI, F.S. Independent vendors are not required to be licensed or

registered.

Other Standards Independent vendors must have at least 1 year of experience working in a

medical, psychiatric, nursing, or child care setting or working with

developmentally disabled persons. College or vocational/technical

training, equal to 30 semester hours, 45 quarter hours, or 720 classroom

hours can substitute for the required experience. Background screening

required of independent vendors.

Companion

Provider Types Home health agencies, hospice agencies, and independent vendors.

Licensure/Registration Home health and hospice agencies shall be licensed by the Agency for

Health Care Administration, Chapter 400, Part IV or Part VI, F.S.

Independents shall be registered with the Agency for Health Care

Administration as companions or sitters in accordance with Section

400.509, F.S.

Other Standards Background screening required for independent vendors.

Day Training (Adult)

Provider Types Centers or sites designated by the district DS office as adult day training

centers.

Licensure/Registration Licensure/registration is not required.

Other Standards Background screening required for all direct care staff.

Page 39 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Appendix IV 

Licensure, Certification, and Other

Standards for Waiver Program Services

Environmental

Modifications

Provider Types Contractors, electricians, plumbers, carpenters, handymen, medical supply

companies, and other vendors.

Licensure/Registration Contractors, plumbers, and electricians will be licensed by the Department

of Business and Professional Regulation in accordance with Chapter 489,

F.S. Medical supply companies, carpenters, handymen, and other vendors

shall hold local occupational licenses or permits in accordance with

Chapter 205, F.S.

Other Standards None.

Homemaker

Provider Types Home health agencies, hospice agencies, and independent vendors.

Licensure/Registration Home health and hospice agencies shall be licensed by the Agency for

Health Care Administration in accordance with Chapter 400, Part IV or

Part VI, F.S. Independent vendors must be registered as homemakers with

the Agency for Health Care Administration in accordance with Section

400.509, F.S.

Other Standards Background screening required for independents.

Nonresidential Support

Provider Types Independent vendors and agencies.

Licensure/Registration Licensure/registration is not required.

Other Standards Independent vendors must have at least 1 year of experience working in a

medical, psychiatric, nursing, or child care setting or in working with

developmentally disabled persons. College or vocational/technical training

that equals at least 30 semester hours, 45 quarter hours, or 720 classroom

hours may substitute for the required experience. Agency employees

providing this service must meet the same requirements. Background

Page 40 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Appendix IV 

Licensure, Certification, and Other

Standards for Waiver Program Services

screening required of agency employees who perform this service and of

independent vendors.

Occupational Therapy and

Assessment

Provider Types Occupational therapists, occupational therapy aides, and occupational

therapy assistants. Occupational therapists, aides, and assistants may

provide this service as independent vendors or as employees of licensed

home health or hospice agencies.

Licensure/Registration Occupational therapists, occupational therapy aides, and occupational

therapy assistants shall be licensed by the Department of Business and

Professional Regulation in accordance with Chapter 468, Part III, F.S. and

may perform services only within the scope of their licenses. Home health

and hospice agencies shall be licensed by the Agency for Health Care

Administration in accordance with Chapter 400, Part IV or Part VI, F.S.

Other Standards None.

Personal Care Assistance

Provider Types Home health and hospice agencies and independent vendors.

Licensure/Registration Home health and hospice agencies shall be licensed by the Agency for

Health Care Administration in accordance with Chapter 400, Part IV or

Part VI, F.S. Independent vendors are not required to be licensed or

registered.

Other Standards Independent vendors shall have at least 1 year of experience working in a

medical, psychiatric, nursing, or child care setting or working with

developmentally disabled persons. College or vocational/technical training

that equals at least 30 semester hours, 45 quarter hours, or 720 classroom

hours may substitute for the required experience. Background screening is

required of independent vendors.

Page 41 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Appendix IV 

Licensure, Certification, and Other

Standards for Waiver Program Services

Personal Emergency

Response System (PERS)

Provider Types Electrical contractors and alarm system contractors.

Licensure/Registration Electrical contractors and alarm system contractors must be licensed by

the Department of Business and Professional Regulation in accordance

with Chapter 489, Part II, F.S.

Other Standards None.

Physical Therapy and

Assessment

Provider Types Physical therapist and physical therapist assistants. Physical therapist and

assistants may provide this service as independent vendors or as

employees of licensed home health or hospice agencies.

Licensure/Registration Physical therapists and therapist assistants shall be licensed by the

Department of Business and Professional Regulation in accordance with

Chapter 486, F.S., and may perform services only within the scope of their

licenses. Home health and hospice agencies shall be licensed by the

Agency for Health Care Administration in accordance with Chapter 400,

Part IV or Part VI, F.S.

Other Standards None.

Private Duty Nursing

Provider Types Registered nurses and licensed practical nurses. Nurses may provide this

service as independent vendors or as employees of licensed home health

or hospice agencies.

Licensure/Registration Nurses shall be registered or licensed by the Department of Business and

Professional Regulation in accordance with Chapter 464, F.S. Home health

or hospice agencies shall be licensed by the Agency for Health Care

Administration in accordance with Chapter 400, Part IV or Part VI, F.S.

Other Standards None.

Page 42 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Appendix IV 

Licensure, Certification, and Other

Standards for Waiver Program Services

Psychological Services

Provider Types Psychologists.

Licensure/Registration Psychologists shall be licensed by the Department of Business and

Professional Regulation, Chapter 490, F.S.

Other Standards None.

Residential Habilitation

Provider Types Group homes, foster homes, and adult congregate living facilities and

independent vendors.

Licensure/Registration Group and foster homes facilities shall be licensed by the Department of

Health and Rehabilitative Services in accordance with Chapter 393, F.S.

Adult congregate living facilities shall be licensed by the Agency for Health

Care Administration in accordance with Chapter 400, Part III, F.S.

Licensure or registration is not required for independent vendors.

Other Standards Independent vendors must possess at least an associate’s degree from an

accredited college with a major in nursing; education; or a social,

behavioral, or rehabilitative science. Experience in one of these fields

shall substitute on a year-for-year basis for required education.

Background screening required of direct care staff employed by licensed

residential facilities and independent vendors.

Respite Care

Provider Types Group homes; foster homes; adult congregate living facilities; home health

agencies; hospice agencies; other agencies that specialize in serving

persons who have a developmental disability; and independent vendors,

registered nurses, and licensed practical nurses.

Licensure/Registration Group and foster homes shall be licensed by the Department of Health and

Rehabilitative Services in accordance with Chapter 393, F.S. Adult

congregate living facilities shall be licensed by the Agency for Health Care

Administration in accordance with Chapter 400, Part III, F.S. Home health

and hospice agencies shall be licensed by the Agency for Health Care

Administration in accordance with Chapter 400, Part IV or Part VI, F.S.

Page 43 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Appendix IV 

Licensure, Certification, and Other

Standards for Waiver Program Services

Nurses who render the service as independent vendors shall be licensed or

registered by the Department of Business and Professional Regulation in

accordance with Chapter 464, F.S. Licensure or registration is not required

for independent vendors who are not nurses.

Other Standards Background screening is required of direct care staff employed by licensed

residential facilities and other agencies that serve persons who have a

developmental disability and of independent vendors who are not

registered or licensed practical nurses. Independent vendors who are not

nurses must have at least 1 year of experience working in a medical,

psychiatric, nursing, or child care setting or working with developmentally

disabled persons. College or vocational/technical training that equals at

least 30 semester hours, 45 quarter hours, or 720 classroom hours may

substitute for the required experience.

Skilled Nursing Care

Provider Types Registered nurses and licensed practical nurses. Nurses may provide this

service as independent vendors or as employees of licensed home health

or hospice agencies.

Licensure/Registration Nurses shall be registered or licensed by the Department of Business and

Professional Regulation in accordance with Chapter 464, F.S. Home health

and hospice agencies shall be licensed by the Agency for Health Care

Administration in accordance with Chapter 400, Part IV or Part VI, F.S.

Other Standards None.

Special Medical Home

Care

Provider Types Group homes that employ registered nurses, licensed practical nurses, or

licensed nurse aides.

Licensure/Registration Group homes shall be licensed by the Department of Health and

Rehabilitative Services in accordance with Chapter 393, F.S. Nurses shall be

registered or licensed by the Department of Business and Professional

Regulation in accordance with Chapter 464, F.S. and may perform services

only within the scope of their license or registration.

Page 44 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Appendix IV 

Licensure, Certification, and Other

Standards for Waiver Program Services

Other Standards Background screening required of direct care staff employed by licensed

group homes.

Specialized Medical

Equipment and Supplies

(See Florida’s approved waiver renewal application for 1993-98.)

Provider Types Medical supply companies, licensed pharmacies, and independent

vendors.

Licensure/Registration Pharmacies must be licensed by the Department of Business and

Professional Regulation in accordance with Chapter 465, F.S. Medical

supply companies and independent vendors must be licensed under

Chapter 205, F.S.

Other Standards None.

Speech Therapy and

Assessment

Provider Types Speech-language pathologists and speech-language pathology assistants.

Speech-language pathologists or assistants may provide this service as

independent vendors or as employees of licensed home health or hospice

agencies.

Licensure/Registration Speech-language pathologists and pathology assistant shall be licensed by

the Department of Business and Professional Regulation in accordance

with Chapter 468, Part I, F.S. Home health and hospice agencies shall be

licensed by the Agency for Health Care Administration in accordance with

Chapter 400, Part IV or Part VI, F.S.

Other Standards None.

Support Coordination

(Case Management)

Provider Types Single practitioner vendors or agency vendors.

Licensure/Registration Licensure is not required.

Page 45 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Appendix IV 

Licensure, Certification, and Other

Standards for Waiver Program Services

Other Standards Single practitioners and support coordinators employed by agencies shall

have a bachelor’s degree from an accredited college or university and 2

years of professional experience in mental health, counseling, social work,

guidance, or health and rehabilitative programs. A master’s degree shall

substitute for 1 year of the required experience. Providers (single

practitioners and agency directors/managers) are required to complete

statewide training conducted by the Developmental Services Program

Office, as well as district-specific training conducted by the district DS

office. Support coordinators employed by agencies are also required to be

trained on the same topics covered in the statewide and district-specific

training; however, this training may be conducted by the support

coordination agency if approved by the district and the agency trainer

meets specific requirements described in Chapter 10F-13, Florida

Administrative Code.

Supported Living Coaching

Provider Types Independent vendors and agency vendors.

Licensure/Registration Licensure is not required.

Other Standards Independent vendors and employees of agencies who render this service

shall have a bachelor’s degree from an accredited college or university

with a major in nursing; education; or a social, behavioral, or rehabilitative

science or shall have an associate’s degree from an accredited college or

university with a major in nursing; education; or a social, behavioral, or

rehabilitative science and 2 years of experience. Experience in one of

these fields shall substitute on a year-for-year basis for the required

college education. Agency employees are required to attend at least 12

hours of preservice training and independent vendors must attend at least

one supported living-related conference or workshop before certification.

All providers and employees are also required to attend human

immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS)

training. Background screening is required.

Transportation

Provider Types Independent vendors and commercial transportation agencies.

Page 46 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
Appendix IV 

Licensure, Certification, and Other

Standards for Waiver Program Services

Licensure/Registration Providers shall hold applicable licenses issued by the Department of

Highway Safety and Motor Vehicles and shall secure appropriate

insurance. Proof of license and insurance shall be provided to the district

DS office.

Other Standards Background screening required for independent vendors.

Page 47 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
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(101341) Page 48 GAO/HEHS-96-120 Waiver Program for Developmentally Disabled
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