Managed Long-Term Services and Supports 

President’s Committee for People with 

Intellectual Disabilities 

2012 Report to the President 
 

 

 

 

EXECUTIVE SUMMARY 

Major transformations are occurring across the country in the financing and delivery of 

long-term services and supports for individuals with disabilities. Long-term services and 

supports include assistance with activities of daily living, such as getting dressed, taking 

medication, preparing meals, and managing money. They include a broad range of 

services and supports across settings, including personal assistance services, family 

support, home and community-based services (HCBS), intermediate care facilities for 

individuals with developmental disabilities (ICFs/DD), and nursing homes. These 

services and supports have traditionally been provided on a fee-for-service basis. 

However, states are increasingly interested in developing Managed Long-Term 

Services and Supports (MLTSS) programs, which apply principles of managed care. 

While most individuals without disabilities in Medicaid receive services in managed care 

systems, very few individuals with disabilities and seniors who need long-term services 

and supports are in managed care. In MLTSS programs, states contract with managed 

care entities to coordinate the financing and delivery of services and supports. States 

are interested in designing MLTSS programs that better coordinate and integrate these 

services with acute care in hopes of improving quality and achieving savings. 

Over the next two years alone, the number of states with MLTSS programs is projected 

to grow from 16 to 26. At least 11 new states are planning to include individuals with 

intellectual and developmental disabilities (ID/DD) in MLTSS programs. Only a handful 

of states have experience overseeing MLTSS programs for individuals with ID/DD. 

Research on outcomes is extremely limited and findings are mixed. Many states 

pursuing MLTSS are planning to contract with outside health plans that have little 

experience serving individuals with ID/DD. 

Disability stakeholder engagement in the design, implementation, and oversight of 

MLTSS programs is essential to ensure consumer protections and shape direction. 

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Managed care provides powerful tools (such as contract language and quality 

measures) that state advocates can use to accelerate systems change towards desired 

outcomes. Some advocates see opportunities to make improvements in such areas as 

prevention and wellness, options for self-direction, and rebalancing. There is also 

potential to reinvest savings to help address unmet needs and waiting lists. 

There are two main purposes of this report. The first section of the report provides 

background on MLTSS to assist with informing the ID/DD community. Managed care is 

complex. It is critical to have a basic understanding of the changes occurring and ways 

to influence outcomes. This section addresses the following questions: 

• What are “Managed Long-Term Services and Supports”? 

• What experiences do states have with MLTSS? 

• Why are more states interested in MLTSS? 

• What are potential benefits and concerns? 

• How can advocates shape direction of MLTSS programs? 

The second section of the report makes federal recommendations. The central mission 

of the President’s Committee for People with Intellectual Disabilities is to make 

recommendations to the President of the United States and the Secretary of the 

Department of Health and Human Services. 

The following recommendations are made: 

Disability Stakeholder Engagement 

1) The Administration for Community Living (ACL) should have access to funds 

to provide training and technical assistance on MLTSS for self-advocates with 

ID/DD and family members. 

2) The ACL should work with the Centers for Medicare and Medicaid Services 

(CMS) to provide resources to coalitions of consumer organizations to 

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strengthen their capacity to engage in development and implementation of 

MLTSS programs. 

3) CMS should collaborate with the ACL on guidance and oversight to ensure 

meaningful and ongoing stakeholder engagement of consumer organizations. 

Choice and Self-Determination 

4) CMS should not allow states to carve out any institutional services and 

settings (including nursing facilities and ICFs/DD) from MLTSS. 

5) CMS and states should promote person-centered planning and options for 

self-directed supports in MLTSS. 

6) CMS should encourage states and health plans to reinvest savings from 

MLTSS programs to address unmet needs and waiting lists. 

7) CMS and states should ensure that individuals with ID/DD and their families 

have accessible information and assistance from independent navigators to 

help them understand their enrollment choices and rights. 

8) The Department of Education, in collaboration with the Department of Health 

and Human Services and Social Security Administration, should assist 

students with disabilities and their families through the transition process as 

students move from high school to adult life in understanding and navigating 

HCBS and MLTSS. 

Consumer Protections and Rights 

9) CMS should not approve MLTSS programs without strong and transparent 

assessment of state and plan capacity and readiness to adequately serve 

individuals with ID/DD and their families. 

10) CMS should require states to have independent systems in place to assist 

consumers with complaints, advocate on their behalf, and monitor MLTSS 

programs for systemic problems (often referred to as ombuds programs).* 

*After PCPID members voted on the abovementioned recommendation, CMS started 

the initial work in this area. 

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11) The ACL should work with federal and state partners to promote supported 

decision making, self-determination, and self-advocacy, as well as avoiding 

inappropriate use of guardianship in MLTSS programs. 

Quality Measurement, Data Collection and Research 

12) CMS should work with the ACL and key stakeholders to issue guidance on a 

core set of HCBS quality and reporting measures that are appropriate to the 

specific needs of people with ID/DD and focus on quality-of-life outcomes. 

13) CMS should only approve MLTSS proposals that include quality measures and 

reporting (as indicators) that ensure access to competent, stable, and welltrained direct support professional workforce. 

14) CMS should work with the ACL and key stakeholders to develop measures to 

fill gaps in HCBS quality measurement, for both the unique needs of specific 

populations such as individuals with ID/DD as well the measures that apply to 

all populations. 

15) The ACL should convene federal partners, researchers, states, health plans, 

and others to promote external evaluations and research on MLTSS. 

5 
 

 

 

 

 

 

-

I. BACKGROUND

Rapid transformations are occurring within states 

towards systems of Managed Long- Term Services 

and Supports (MLTSS). This movement is 

extremely complex and has significant implications 

for individuals with intellectual and developmental 

disabilities (ID/DD) and their families. The 

President’s Committee for People with Intellectual 

Disabilities believes it is critical for the ID/DD 

community to be fully informed and engaged at both 

the state and federal levels. 

Therefore, this report consists of two main sections. 

The first section is primarily aimed at selfadvocates, family members, and professionals at 

the state level, since that is where the majority of 

action on MLTSS will occur. It is intended to provide 

a basic overview to better inform the ID/DD 

community. It addresses the following questions: 

• What are “Managed Long-Term Services and Supports”?

• What experiences do states have with MLTSS?

• Why are more states interested in MLTSS?

• What are potential benefits and concerns?

• How can advocates shape direction of MLTSS programs?

The second section of the report makes recommendations at the federal level to the 

President of the United States and Secretary of the Department of Health and Human 

Services. 

The topic of Managed Long Term 

Services and Supports (MLTSS) 

is extremely complex. The 

President’s Committee for 

People with Intellectual 

Disabilities has strived to make 

this report as understandable as 

possible. To assist with 

understanding, there is a 

glossary of managed care terms 

and list of frequently used 

acronyms in the appendix. 

Concepts are also explained in 

the text. The use of acronyms 

was kept to a minimum. In 

addition, a shorter version of this 

report was prepared using easier 

to understand language to make 

the report more accessible. 

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What Are “Managed Long-Term Services and Supports”? 

Long-term services and supports include assistance with activities of daily living, such 

as getting dressed, taking medication, preparing meals, and managing money. They 

include a broad range of services and supports across settings, including personal 

assistance services, family support, home and community-based services (HCBS), 

intermediate care facilities for individuals with intellectual disabilities (ICFs/IID), and 

nursing homes. Managed Long-Term Services and Supports (MLTSS) is a term that 

refers to financing and delivering long-term services and supports based on principles of 

managed care. Traditionally, states have provided Medicaid to individuals with 

disabilities through a fee-for-service system. Under this type of system, individuals who 

qualify for Medicaid can receive services and supports from any Medicaid health care or 

service provider. The fee-for-service system can lead to poor communication and 

coordination between providers, which can result in reduced quality of care and 

unnecessary costs. 

Similar to private health insurance, over the past several decades more states have 

moved towards managed care approaches in Medicaid. There are different types of 

managed care models, but they all have similar goals of improving the coordination of 

services and controlling costs. Some models of Medicaid managed care build on the 

fee-for-service model. For example, some states have provided enhanced payments to 

primary care providers or case managers to better coordinate health care and services. 

However, the focus of this report is primarily on what is commonly referred to as “riskbased” managed care. 

Under risk-based managed care, a state typically contracts with outside Managed Care 

Organizations (MCOs). MCOs agree to provide all services in a contract in exchange for 

a fixed monthly payment from the state. This payment process is referred to as 

capitation (MCOs receive a “capitated” rate for each individual they serve). Individuals in 

managed care typically have a care manager and team that coordinate all their care and 

services. Individuals must obtain approval before receiving services. MCOs also limit 

services and choice of providers to those that are in the plan’s “network” of providers. 

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Since MCOs receive a fixed payment, there are financial incentives to improve 

coordination of care and services, focus on prevention and wellness, and reduce 

unnecessary services –such as avoidable emergency room visits and hospitalizations. 

At a basic level, if the actual costs of providing services are lower than the “capitated” 

payment received from the state, then MCOs can make a profit. However, if costs are 

higher, then MCOs are “at risk” of a loss. States also frequently build in other financial 

incentives for MCOs to meet desired quality benchmarks and performance goals. 

The use of Medicaid managed care has grown rapidly over the past 15 years. Of the 

approximately 60 million low-income individuals who receive health care and related 

services from Medicaid, over two-thirds are now enrolled in some form of managed care 

(MACPAC, 2011). While most states have required enrollment of children, pregnant 

women, and adults without disabilities in Medicaid managed care, only about 10% of 

enrollees in risk-based Medicaid managed care are individuals with disabilities. There 

are a variety of reasons for this, including resistance from disability service providers, 

health plans being unfamiliar with the complex needs of individuals with disabilities, and 

uncertainties about adequate rate settings and associated risks for health plans (Gifford, 

Smith, Snipes, & Paradise, 2011). 

Recently, states have shown renewed interest in managed care for individuals with 

disabilities and seniors. Some managed care programs have been designed solely 

around acute care (physician services, outpatient medical care, hospital services, etc.). 

However, since many seniors and individuals with disabilities also need long-term 

services and supports, many states are interested in designing MLTSS programs for 

these populations. Some MLTSS models keep payments for acute care and long-term 

services and supports separate, while often putting in place mechanisms to improve 

coordination between the systems. Other MLTSS models provide a single risk-based 

payment to health plans in order to better integrate acute and long-term services and 

supports. 

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What Experiences Do States Have with MLTSS? 

While there is a long history of experimentation, the experience of states with MLTSS 

programs is very limited. Most experience comes from small-scale programs serving 

individuals in certain geographic locations or subpopulations of individuals with 

disabilities. Early models of MLTSS date back as far as the 1980s with the Program for 

All Inclusive Care for the Elderly (PACE) demonstrations and the Arizona Long-Term 

Care System (ALTCS) (O’Keeffe et al., 2010). 

PACE is a model that provides integrated Medicaid and Medicare services to older 

individuals (55 and older). It uses an interdisciplinary team approach, centered on adult 

day care, to support seniors in the community who otherwise would likely end up in 

nursing homes. Arizona has the longest history of implementing statewide Medicaid 

managed care. Arizona was the last state in the country to take up Medicaid. When 

Arizona adopted Medicaid in the early 1980s, the state used a Medicaid demonstration 

waiver to design their entire program around principles of risk-based managed care. In 

1988-89, the Arizona Long Term Care System (ALTCS) was phased in to extend 

managed care to long-term services and supports statewide, including services for 

individuals with ID/DD. 

During the 1990s, other states began applying risk-based managed care strategies that 

included long-term services and supports, either within Medicaid alone or through 

initiatives to better integrate care for individuals receiving both Medicaid and Medicare. 

In 1997, Congress passed legislation that provided states greater authority to require 

mandatory enrollment in Medicaid managed care. States increasingly developed 

managed care systems for children and pregnant women in Medicaid. States expressed 

great interest in extending managed care to individuals with disabilities, including 

individuals with ID/DD (Smith & Ashbaugh, 1995). While programs did not materialize in 

all states that expressed interest, a steady stream of states ventured into MLTSS. 

Federal initiatives were also launched that led to small-scale state endeavors to better 

integrate Medicare and Medicaid. 

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Between 2004 and 2012, the number of states with MLTSS programs increased from 8 

to 16; and the number of individuals in MLTSS programs grew from 105,000 to 389,000 

(see Figure 1). While the numbers have increased over the past decade, it is important 

to place them in perspective. Despite growth, only about 6% of total Medicaid long-term 

services and supports are provided in MLTSS programs today. 

FIGURE 1: States with MLTSS Grew from 8 to 16 between 2004 and 2012

Saucier, P., Kasten, J., Burwell, B., & Gold, L. (2012) 

A recent study prepared for the Centers for Medicare and Medicaid Services (CMS) 

illustrates the tremendous diversity across existing MLTSS programs (Saucier, Kasten, 

Burwell, & Gold, 2012). There are a total of 19 different programs in 16 states. Several 

states have large MLTSS programs, some operating statewide. However, other 

programs are very small –such as the Pennsylvania Adult Community Autism Program, 

which only serves about 100 individuals. Older individuals and adults with physical 

disabilities are the most common populations that have been targeted for MLTSS 

programs. 

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Eight of the 16 states mandate enrollment; 7 have voluntary enrollment; and one state 

uses passive enrollment (meaning they automatically enroll individuals into the 

managed care program but they have an opportunity to dis-enroll or “opt out”). States 

have used a variety of contractors, including for-profit health plans, non-profit health 

plans, and public or county/regional-based entities. However, for-profit health plans 

make up about half of the market. The four top market leaders are: United Healthcare, 

Amerigroup, Centene, and Molina Healthcare. 

FIGURE 2: States Enrolling Individuals with Intellectual and 

Developmental Disabilities in MLTSS Programs, 2012 

Saucier, P., Kasten, J., Burwell, B., & Gold, L. (2012) 

According to the environmental scan prepared for CMS, 8 states currently include 

individuals with ID/DD in MLTSS programs (Saucier, Kasten, Burwell, & Gold, 2012) 

(see Figure 2). Yet, the categories of services included vary considerably (see Figure 

3). For example, Delaware, Hawaii, and Washington enroll individuals with ID/DD in 

managed care for acute care, but Home and Community-Based Services (HCBS) are 

“carved out” (meaning they are not included in the MLTSS program and are provided 

11 
Program Primary - ID/DD Institutional Behavioral Rx 

Acute HCBS 

AZ Long Term Care System X X X X X 

DE Diamond State Health 

Plan-Plus 

X - X X -

HI QUEST Expanded Acess X - X X X 

MI Managed Specialty 

Support & Services 

- X X X -

NC MH/DD/SAS Health Plan 

Waiver - X X X -

PA Adult Community Autism 

Program 

- X X X -

WA Medicaid Integration 

Partnership 

X - X X X 

WI Family Care Partnership X X X X X 

WI Family Care - X X X -

separately). On the other hand, Michigan, North Carolina, Pennsylvania, and the 

Wisconsin Family Care Program offer HCBS waiver services in their MLTSS programs 

but manage acute care through separate programs. 

FIGURE 3: Major Service Types Included in Capitation for MLTSS 

Programs Enrolling Individuals with ID/DD 

Saucier, P., Kasten, J., Burwell, B., & Gold, L. (2012) 

In addition, programs vary in the types of managed care entities with which states have 

contracted (see Figure 4). Further illustrating the diversity of approaches states have 

taken, the CMS study did not list Vermont as a state that provides MLTSS. Vermont 

provides a unique model of MLTSS where the state serves as the managed care entity. 

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Program Managed Care Entity 

AZ Long Term Care System State Agency (Division of Developmental Disabilities) 

DE Diamond State Health PlanPlus 

2 National Health Plans 

HI QUEST Expanded Acess 2 National Health Plans 

MI Managed Specialty Support & 

Services 18 County-Based Entities (1 per service area) 

NC MH/DD/SAS Health Plan 

Waiver 3+ Local Management Entities (1 per service area) 

PA Adult Community Autism 

Program 1 Provider Organization (Keystone Autism Services) 

WA Medicaid Integration 

Partnership 

1 National Health Plans 

WI Family Care Partnership 9 County-Based or Non-Profit Entities (1 per service 

area) 

WI Family Care 4 Local Health Plans 

For the purposes of this report, Vermont is included in the discussion of MLTSS 

programs. 

FIGURE 4: Types of Contractors in MLTSS Programs Enrolling 

Individuals with ID/DD 

Saucier, P., Kasten, J., Burwell, B., & Gold, L. (2012) 

Four states stand out as having the most experience serving individuals with ID/DD in 

MLTSS: Arizona, Michigan, Vermont, and Wisconsin. Each state program has its own 

unique history, evolution, and experience. State officials and consumer advocates from 

three of these states (Arizona, Michigan, and Vermont) were invited to brief the 

13 
 

 

 

 

 

 

 

 

President’s Committee for People with Intellectual Disabilities about their MLTSS 

programs. Case studies from these three states are contained in the Appendix. 

One striking similarity across these states is that they have pursued models of managed 

care that build on “public” entities versus outside health plans (Gettings, 2009). 

In Arizona, the state developmental disabilities services agency serves as the managed 

care entity. In Vermont, the state Medicaid agency serves as the managed care entity. 

In Michigan and Wisconsin, the state contracts with county/regional networks based on 

elements of previously existing mental health, substance abuse, and ID/DD service 

systems. In these models there are varying levels of risk assumed directly by the 

entities managing care. However, the extent of risk is very different from traditional 

models of managed care where states contract with outside health plans. Within the 

current resurgence of interest in MLTSS, states are planning to predominately contract 

with outside health plans, mostly large for-profit health plans. There is little history of 

such health plans managing long-term services for the ID/DD population. 

Why Are More States Interested in MLTSS? 

Over the next two years alone, the number of states with MLTSS programs is projected 

to grow significantly, from 16 to 26 (see Figure 5). In addition, at least 11 new states are 

planning to include individuals with ID/DD in MLTSS initiatives (California, Idaho, Illinois, 

Kansas, Massachusetts, Michigan, New Hampshire, New York, Ohio, Virginia, and 

Washington). 

Two main factors are driving greater interest in the use of MLTSS: 1) state budget 

challenges; and 2) new opportunities and incentives in the Affordable Care Act. 

14 
 

 

 

States continue to face significant budget challenges due to lingering effects of the 

recession (Cheek et al., 2012). Major revenue sources for state general funds remain 

below pre-recession levels for most states. The recession has also contributed to 

greater pressures on Medicaid and other publicly funded services. More individuals rely 

on Medicaid during times of economic downturn because they lose access to their 

health insurance through work and have less income and assets. 

FIGURE 5: Twenty-Six States Projected to have MLTSS Programs by 2014 

Saucier, P., Kasten, J., Burwell, B., & Gold, L. (2012) 

Between October 2008 and June 2011, the American Recovery and Reinvestment Act 

provided fiscal relief to states through an enhanced federal match for Medicaid. 

However, this assistance has phased out while many states continue to face budget 

shortfalls (NGA and NASBO, 2012). States are also concerned about future pressures 

on the Medicaid program, including pressures related to the aging of the baby boom 

generation and increased needs for long-term services and supports. Since Medicaid 

15 
 

 

 

 

 

 

 

 

 

HCBS are optional for states, they are extremely vulnerable to cutbacks during times of 

economic pressures. Many states have already made short-sighted cuts in HCBS 

services and provider rates while waiting lists continue to grow. To avoid even deeper 

cuts, states are looking for ways to provide services more efficiently. 

The Affordable Care Act provides many new options and financial incentives that states 

can adopt to improve coordination, integration and rebalancing, such as the new 

Balancing Incentives Program and Community First Choice Option (Caldwell, 2010). In 

addition to these options, the Affordable Care Act established a new Medicare-Medicaid 

Coordination Office. The purpose of this new office is to improve quality, reduce costs, 

and improve the beneficiary experience for individuals who are enrolled in both 

Medicaid and Medicare (commonly referred to as “dual eligible beneficiaries”). Medicaid 

provides health care and long-term services and supports for low-income individuals. 

Medicare provides health care to seniors and individuals who qualify for Social Security 

Disability Insurance (SSDI). Medicare does not provide long-term services and 

supports. There are about 9 million dual eligible beneficiaries who receive both 

Medicaid and Medicare. 

The population of dual eligible beneficiaries is a very diverse population with complex 

needs for health care and long-term services and supports (Coughlin, Waidmann, 

Phadera, Garfield, & Lyons, 2012). There is a long history of the Medicare and Medicaid 

programs not working efficiently together, often resulting in poorly aligned incentives, 

cost shifting between the programs, and reduced quality of care. Therefore, the 

Medicare-Medicaid Coordination Office has launched a number of initiatives that aim to 

improve care coordination, integrate benefits, and enhance communication and data 

sharing that lead to cost-shifting between the two programs and poor quality of care for 

beneficiaries. 

One new effort launched by the Medicare-Medicaid Coordination Office is called the 

Financial Alignment Initiative (commonly referred to as the “duals integration” 

demonstrations). In April 2011, CMS awarded design contracts to 15 states in order to 

16 
 

 

develop proposals to test demonstrations that better align the financing and delivery of 

services for dual eligible beneficiaries. 

The initiative was expanded in July 2011, when CMS provided additional guidance to 

states outlining two models they could pursue: 1) capitated managed care model; and 

2) managed fee-for-service model. The capitated managed care model involves a threeway agreement between CMS, the state, and health plans. Medicare and Medicaid

funding will be blended to provide participating plans with a single capitated rate for all

specified acute, behavioral health, and long-term services and supports. The managed

fee-for-service model involves an agreement between CMS and the state. The state will

be responsible for improving care coordination and ensuring access to all Medicaid and

Medicare services. If states are able to achieve savings, they will be allowed to share in

some of those savings. 

State interest in this initiative was overwhelming. A total of 37 states, including the 15 

states awarded design contracts, expressed interest to CMS in testing duals integration 

demonstrations. Twenty-six states (AZ, CA, CO, CT, HI, ID, IL, IA, MA, MI, MN, MO, 

NM, NY, NC, OH, OK, OR, RI, SC, TN, TX, VT, VA, WA, and WI) submitted proposals 

to CMS in early 2012, although several states have since withdrawn. The majority of 

states are pursuing the capitated managed care model. A handful of states are pursuing 

the managed fee-for-service model, and a few want to test both. The next phase in the 

process is a signed agreement –called a Memorandum of Understanding (MOU) – 

between CMS and states outlining details of their plan. Five states currently have 

MOUs. 

State proposals for the duals integration demonstrations vary considerably, based to a 

large degree on existing systems and managed care structures in states (Musumeci, 

2012). Some states have included all dual eligible beneficiaries, while others have 

targeted certain populations or geographic regions. Some states have specifically 

“carved out” (excluded) certain subpopulations and services from the demonstrations. 

Some states have proposed demonstrations that do not include individuals with ID/DD 

17 
 

 

 

(NASDDDS, 2012). In other states, individuals with ID/DD are partially included –for 

example, individuals with ID/DD may be included in the demonstration but HCBS are 

excluded. In at least two states, individuals with ID/DD are fully included in the 

demonstrations. 

The duals integration demonstrations, particularly states pursuing the capitated 

managed care model, are driving systems transformation towards MLTSS. Many states 

pursuing the demonstrations are also simultaneously pursuing much larger mandatory 

Medicaid MLTSS applications (for example, New York). At least six other states are 

pursuing large Medicaid MLTSS programs outside of the duals integration 

demonstrations (Florida, Kansas, Pennsylvania, New Hampshire, New Jersey, and New 

Mexico) (NASUAD, 2012). Faced with lingering impacts of the recession and concerns 

about future pressures on Medicaid, states are combining multiple new Affordable Care 

Act provisions with existing authorities for Medicaid managed care. 

What Are Potential Benefits and Concerns? 

The outcomes of MLTSS will be predominately driven by the design of programs at the 

state level. Managed care is a different way to finance and deliver health care and longterm services and supports. It is inherently neither “good” nor “bad” for individuals with 

ID/DD. How MLTSS programs are designed and implemented will vary greatly across 

states –just as the current, predominately fee-for-service state developmental 

disabilities systems vary. There are many potential benefits and legitimate concerns 

(see Figure 6). 

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FIGURE 6: Potential Benefits and Concerns in MLTSS 

Potential Benefits: 

• Improved Coordination 

Reductions in Health Disparities

Benefits in Prevention, Wellness,

and Training of Health Providers 

Rebalancing

Greater Options for Self-Direction

Reduce Waiting Lists and Unmet

Needs

Reinvestment of Savings in

Added Benefits 

•

•

•

•

•

•

Concerns: 

• Reduced Access

Limits in Consumer Choice

Medicalization of Long-Term

Services and Supports

Knowledge and Expertise of

Health Plans in Disability

State Capacity and

Infrastructure to Oversee

Programs

Complexities in Rate Setting 

•

•

•

•

•

While this report focuses on long-term services and supports, movement towards 

MLTSS is most often occurring in combination with efforts to better integrate acute care, 

behavioral health, and long-term services and supports. Individuals with disabilities 

experience significant health disparities and access barriers in the current Medicaid feefor service system (Drum, McClain, Horner-Johnson, & Taitano, 2011; Krahn, 

Hammond, & Turner, 2006; Office of the Surgeon General 2002, 2005). Individuals with 

ID/DD are less likely to receive preventive care such as routine screenings for breast, 

cervical, and prostate cancer. They are less likely to receive routine influenza and other 

immunizations. They face significant barriers to receiving routine dental care. Individuals 

with ID/DD are at risk for overuse of psychotropic medications and adverse effects from 

drug interactions. They often do not have access to community-based behavioral 

supports. Individuals with ID/DD face high rates of obesity and low rates of physical 

activity. Many individuals with disabilities do not have access to evidence-based 

programs to self-manage chronic conditions, promote healthy lifestyles, and prevent the 

development of secondary conditions. 

19 
Individuals with disabilities frequently experience physical and programmatic access 

barriers to health care. While the Affordable Care Act is making strides in this area, 

many health care facilities and equipment (such as weight and examination tables) 

remain physically inaccessible (National Council on Disability, 2009). Training of health 

professionals in the area of disability is woefully inadequate, contributing to reduced 

quality of care and frequent communication barriers between patients with disabilities 

and health professionals. Youth with disabilities face significant barriers in health care 

transitions from pediatric to adult systems of health care and services (Gleason, Palmer, 

Bhagat, & Reiss, 2009). For example, many youth with ID/DD continue to see their 

pediatrician well into adulthood due to lack of adequately trained adult providers. 

Moreover, direct support professionals are often not recognized as important members 

of interdisciplinary teams to help coordinate acute care with long-term services and 

supports. 

Compared with the traditional fee-for-service system, movement towards managed care 

can provide excellent tools to improve coordination, quality, and access to acute care 

for individuals with ID/DD. However, there are also legitimate concerns among 

advocates about limiting access to care. There are concerns about sudden disruptions 

of care and services. Managed care will limit choice of providers to those in approved 

networks. Some individuals with ID/DD and their families have established trusted 

relationships with health care providers over many years. They could lose access to the 

only local provider with adequate training and competence serving individuals with 

ID/DD. There are particular concerns about access to specialists to meet unique 

complex medical needs and circumstances of some individuals with ID/DD. In addition, 

there are concerns of denials and reductions in necessary services, which could occur 

due to motives of health plans to maximize profits and/or inadequate payments to health 

plans from states seeking to fill immediate budget shortfalls. 

There are legitimate reasons for caution. The fact is that research on the outcomes of 

Medicaid managed care for individuals with disabilities, particularly individuals with 

ID/DD, is scarce and inconclusive. Recent analyses of the literature have indicated 

20 
 

 

 

 

 

mixed findings on access and quality (Connolly & Paradise, 2012). Moreover, it is 

virtually impossible to draw any general, overarching conclusions from the research due 

to the tremendous diversity across states in program design, populations served, and 

quality measures. 

While many states are driven by immediate budget pressures, research on cost savings 

is also inconclusive. Compared with other populations, the potential for short-term costs 

savings in the ID/DD population is likely less. Medicaid fee-for-service rates are so low 

in many states that there is very little room for savings by merely squeezing provider 

payments (Connolly & Paradise, 2012). If savings are to be achieved they will likely 

come from long-term improvements in care coordination, promoting health and 

wellness, and avoiding unnecessary hospitalizations and institutional placements (Lewin 

Group, 2004). The potential for savings from preventing unnecessary hospitalizations 

may be less for the ID/DD population in comparison with other populations, such as 

older individuals (Konetzka, Karon, & Potter, 2012). However, research exploring 

preventable hospitalizations has often not considered major reasons for emergency 

room and hospitalizations for individuals with ID/DD –such as behavioral issues, 

seizures, and infections. There are clear opportunities to better understand this area 

and improve care for individuals with ID/DD. To maximize long-range outcomes, 

additional investments in the system, addressing unmet needs for long-term services 

and supports, and targeting efforts to certain subpopulations of individuals with ID/DD 

may be needed (Brown & Mann, 2012). 

Among states that have pursued MLTSS, there has been evidence of rebalancing 

(providing more services in the community versus institutions) (Summer, 2012). This 

can produce long-term, systemic cost savings and the ability to serve additional 

beneficiaries (Kaye, 2012). Contracting with outside MCOs has reduced long-standing 

political barriers in some states. Yet, the potential for savings in the ID/DD residential 

service system through rebalancing may be limited. Overall, about two-thirds of total 

Medicaid long-term services and support spending for individuals with ID/DD is already 

provided in the community versus only about a third for older adults and individuals with 

21 
 

 

 

 

 

 

 

physical disabilities (Eiken, Sredl, Burwell, & Gold, 2011). Moreover, unmet service 

needs for individuals with ID/DD and their families are extremely high. Many states with 

MLTSS programs that include individuals with ID/DD have been able to not only 

rebalance but also significantly reduce or eliminate waiting lists and more equitably 

serve individuals with ID/DD, particularly those living at home with family. 

Some advocates have referred to managed care as a “power tool.” It can be a powerful 

tool to construct systems that achieve more desirable goals and outcomes for 

individuals with ID/DD, but if used incorrectly can be damaging. Despite decades of 

progress, significant disparities remain across states in terms of rebalancing, personcentered planning, options for self-direction, and supports for community-based 

employment (Braddock et al., 2011). Disparities exist in supports for families, unmet 

needs and waiting lists, and availability of an adequate direct support professional 

workforce. Some of these disparities are deeply entrenched. Many disability advocates 

view MLTSS as an opportunity to accelerate system change towards more desirable 

goals and outcomes. 

How Can Advocates Shape Direction of MLTSS Programs? 

Without early involvement and buy-in from individuals with disabilities and their families, 

MLTSS programs will not be successful or sustainable (Lind, Gore, Barnette, & Somers, 

2010). It is not only critical for advocates to be at the table in the early stages when 

programs are being planned, but to maintain ongoing involvement as programs are 

implemented. There are many roles self-advocates, families, disability organizations 

and networks can play. Community Catalyst, a consumer advocacy organization, has 

developed a framework that highlights the many avenues in which disability advocates 

can shape MLTSS programs (Dembner, 2012) (see Figure 7). 

22 
FIGURE 7: Avenues for Consumer Engagement to Shape MLTSS 

Dembner, A. (2012). 

During the initial planning phase, states have taken a variety of approaches to gain 

stakeholder input –such as advisory committees, focus groups, meetings, and outreach 

to specific communities. It is critical to agree upon clear goals for MLTSS programs. For 

example, some states that have developed MLTSS programs for individuals with ID/DD 

clearly identified their goals to rebalance, support families, and reduce or eliminate 

waiting lists. Early opportunities exist for input into the overall design of the program, 

such as: 

• Goals of the MLTSS program

Scope, timeline, and phase-in of the program

Targeted populations, services, and extent to which acute care, behavioral

health, and long-term services and supports are fully integrated

Voluntary versus mandatory enrollment

•

•

•

23 
 

 

 

 

 

• Managed care model and type of MCOs that will be contracted 

States can use different Medicaid authorities to pursue MLTSS programs (O’Keefe et 

al., 2010). Many states have used 1115 demonstration waivers, which provide the 

greatest amount of flexibility. Some states have combined 1915(c) HCBS waivers with a 

1915(b) waiver for managed care. Regardless of which authority is used, states must 

submit applications to CMS for approval, which often provides opportunities for formal 

comments at the state and federal levels. In addition, prior to approving a state 

application, CMS must conduct a state readiness assessment to determine whether the 

state has the capacity to administer and oversee programs (National Council on 

Disability, 2012b). This provides another key pathway for stakeholder input into details 

of the MLTSS program, particularly to enhance consumer protections. State 

applications and readiness reviews should contain detailed information in areas such 

as: 

• Assessment procedures 

• Enrollment processes and consumer protections 

• Care coordination 

• Provider network adequacy and capacity 

• State staffing and capacity for oversight 

Another critical avenue for disability stakeholder input is during the contracting phase 

with MCOs. Requests for proposals and contracts with MCOs express in even greater 

detail standards and accountability. Strong contract language is one of the most 

powerful tools states and advocates can use to ensure consumer protections, enhance 

quality, and achieve desirable outcomes. The contracting phase also involves 

determination of payment rates and in some cases, penalties or incentives for meeting 

performance benchmarks. During the contracting phase, stakeholder input is important 

in such areas as: 

• Adequate payment rates, penalties, and incentives for MCOs 

24 
 

 

 

 

 

 

 

• Requirements of MCOs (such as use of person-centered planning, options for

self-direction, ADA compliance for medical facilities, training of health

professionals in disability, and meaningful inclusion of consumer advisory

boards in program development, implementation, and oversight)

• Continuity of care protections (allowing individuals to continue receiving care

or services from current providers)

• Appeals and grievances procedures

• Quality measures and performance improvement

In addition to contracting with MCOs for services, states have frequently contracted with 

networks serving seniors and people with disabilities to provide various services and 

oversight of MLTSS programs (such as Area Agencies on Aging, Aging and Disability 

Resource Centers, and Centers for Independent Living). Consumer organizations can 

play key roles in such areas as: consumer outreach; independent enrollment navigation 

to assist individuals with disabilities in understanding their rights and choices; consumer 

feedback and quality assessment; and independent ombuds programs to protect rights 

and monitor programs. Continual monitoring and oversight is essential to identifying and 

correcting problems early, as well as examining performance over time and making 

adjustments. 

The stakes are high in MLTSS. The risks for individuals with ID/DD and their families 

are real. Members of the President’s Committee for People with Intellectual Disabilities 

have significant concerns about the movement towards MLTSS in the states. Rather 

than slowly implementing programs, testing pilots, and providing individuals with choice, 

some states are planning to mandatorily enroll populations statewide. There is little 

research and experience to guide best practice. Many state agencies do not have 

capacity and infrastructure ready to effectively oversee MLTSS programs. Many health 

plans interested in contracting with states do not have knowledge and experience 

serving individuals with ID/DD and their families. 

25 
 

 

 

 

 

 

 

 

 

At the same time, based on the case studies presented to the President’s Committee for 

People with Intellectual Disabilities, members also see potential for positive system 

changes that could improve the lives of individuals with ID/DD and their families. 

Opportunities exist to improve service coordination, promote health and wellness, and 

enhance self-determination. There is potential for achieve efficiencies which could 

prevent cuts. Savings could be reinvested to better meet needs and address growing 

waiting lists for services and supports. However, goals for MLTSS programs must be 

clear. Decisions should never be driven by cost savings. Improving systems to better 

meet the needs and desires of individuals with ID/DD and their families must be the 

driving force of MLTSS. 

It is essential to ensure that managed care structures and systems are designed to 

meet the needs of individuals with ID/DD. Some states are planning to develop MLTSS 

for other groups first, and then include individuals with ID/DD at a later date. MLTSS will 

only be successful with meaningful stakeholder engagement. The phrase “Nothing 

About Us Without Us,” is central to the Disability Rights Movement. It is critical for 

individuals with disabilities and their families to be involved early. This is important even 

in states where individuals with ID/DD are initially “carved out” of MLTSS programs. 

CMS requires that when a state is proposing changes in the Medicaid program there 

must be meaningful opportunities for stakeholder and public input. These requirements 

are an important protection to ensure that the input and concerns of individuals with 

ID/DD and their families are considered in the design and implementation of MLTSS. 

There are federal requirements for public input and comment into Medicaid proposals 

(e.g.1115 Medicaid waivers and duals demonstrations). This is a core component of 

principles articulated by the National Council on Disability and many other disability 

organizations. This is a critical stage in the process. However, even before this stage, 

disability stakeholder engagement is essential to articulate clear goals and influence 

early decisions and planning. Moreover, establishing mechanisms for ongoing 

stakeholder input and guidance is also critical to ensure oversight and direction of 

programs as they are implemented. 

26 
 

 

 

 

Whether or not the great amount of state interest that has been expressed in MLTSS 

materializes, and the shape different programs take, will unfold over time. Yet, the 

history of the developmental disabilities field teaches us one thing for certain: The 

greatest dangers occur when the voices of individuals with ID/DD and their families are 

not meaningfully included. 

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II. RECOMENDATIONS

The central mission of the President’s Committee for People with Intellectual Disabilities 

is to provide advice and assistance to the President of the United States and the 

Secretary of Health and Human Services on a broad range of topics that impact people 

with intellectual disabilities and the field of intellectual disabilities. Therefore, the 

recommendations discussed below focus primarily at the federal level. The design, 

implementation, and outcomes of MLTSS programs will be driven by actions at the state 

level. However, the federal government can play key roles in promoting successful 

outcomes in the following four key areas: 

• Disability Stakeholder Engagement

• Choice and Self-Determination

• Consumer Protections and Rights

• Quality Measurement, Data Collection, and Research

The Centers for Medicare and Medicaid Services (CMS) has the largest role to play in 

federal oversight and guidance, but other federal partners can also play key roles. In 

particular, the establishment of the Administration for Community Living (ACL) provides 

a new structure to enhance interagency collaboration, common vision for home and 

community-based services, and aging and disability network involvement in MLTSS. 

Disability Stakeholder Engagement 

Excellent resources have emerged to help provide advocates and states guidance on 

the design and implementation of MLTSS programs. Three resources are highlighted 

below: 

28 
 

 

 

 

 

 

1) The National Council on Disability (NCD, 2012a, 2012b) has outlined

principles and a set of recommendations for successfully enrolling individuals

with disabilities in managed care (available at www.ncd.gov).

2) The Consortium for Citizens with Disabilities (CCD, 2012), a coalition of

approximately 100 national disability organizations, has similarly developed

principles and recommendations for transitioning individuals with disabilities

into managed care (available at www.c-c-d.org).

3) The National Senior Citizens Law Center and the Disability Rights Education

Defense Fund developed an online toolkit for consumer advocates to ensure

consumer protections in MLTSS programs (available

at www.dualsdemoadvocacy.org).

These resources highlight a common vision for well-designed MLTSS programs and 

can assist state advocates. However, the extent to which this vision is translated into 

practice will be influenced by many factors, including: 

• Capacity of consumer advocates to effectively engage

• Processes established for meaningful stakeholder engagement

• Strong federal guidance and oversight

The capacity of advocates to effectively engage in the development of programs is 

currently very limited. Knowledge and expertise is primarily concentrated within states 

that have implemented MLTSS programs. Advocates within these states have learned 

how to effectively advocate within a managed care environment. However, for the vast 

majority of individuals with disabilities, families, and disability networks, managed care 

is completely new and unfamiliar territory. Advocacy within a managed care 

environment presents new and extremely complex terminology, tools, and points of 

intervention to impact outcomes. 

29 
 

 

 

 

 

 RECOMMENDATION #1: The Administration for Community Living (ACL) 

should have access to funds to provide training and technical assistance on 

MLTSS for self-advocates with ID/DD and family members. 

Targeted efforts are needed to build the capacity of self-advocates with ID/DD and their 

families to engage in duals integration and MLTSS activities occurring in states. 

Approximately 18% of all dual eligible beneficiaries are individuals with ID/DD 

(MedPAC, 2010). Yet, there is little reference to any involvement of self-advocates with 

ID/DD or self-advocacy organizations in state proposals submitted to CMS for the duals 

integration demonstrations. Some self-advocates with ID/DD and self-advocacy 

organizations are involved in planning processes within states considering new MLTSS 

programs, but many more are not fully aware or engaged in their states. 

No specific training or technical assistance efforts have been launched to assist selfadvocates with ID/DD in understanding MLTSS. Materials and trainings should be 

developed that use pictures, simple language, and other tools to make communications 

more accessible and effective. Self-advocates and allies should work together to 

develop new trainings opportunities, outreach to self-advocates, and provide peer-topeer support. Coordinated efforts could enhance the capacity of self-advocates to 

engage in the stakeholder process, understand the potential roles self-advocacy 

organizations could play in MLTSS, and shape the direction of MLTSS programs. 

The Administration on Intellectual and Developmental Disabilities (AIDD) has provided 

strong federal leadership in supporting the self-advocacy movement. During 2011 and 

2012, AIDD convened nine regional self-advocacy summits that brought together state 

teams of self-advocates and allies from every U.S. state and territory. The Envisioning 

the Future: Allies in Self-Advocacy summits promoted inclusion and collaboration 

between self-advocates, state developmental disabilities service agencies, and 

Developmental Disabilities Act partners (Caldwell, Arnold, & Rizollo, 2012). Knowledge 

was gained from these summits about working together while ensuring the voice of selfadvocates remains primary. AIDD has also provided a limited number of small awards 

30 
 

 

 

 

 

to assist self-advocacy organizations in building infrastructure. With additional 

resources, AIDD could build upon these efforts to strengthen the capacity of selfadvocates to effectively engage as stakeholders in duals integration and MLTSS. 

 RECOMMENDATION #2: The ACL should work with the Centers for Medicare

and Medicaid Services (CMS) to provide resources to coalitions of consumer

organizations to strengthen their capacity to engage in development and

implementation of MLTSS programs.

In addition to training and technical assistance for self-advocates with ID/DD, 

opportunities exist to support broad-based consumer coalitions to engage in MLTSS 

programs. While federal training and technical assistance initiatives have been aimed at 

state Medicaid agencies to enhance their capacity to pursue duals integration and 

MLTSS, similar initiatives have not been launched to build capacity of consumer 

stakeholders to meaningfully engage. Aging and disability organizations have found a 

common ground and benefit in working together on these issues, particularly to ensure 

strong consumer protections. Rather than working in isolation, coalitions have allowed 

consumer organizations to pool their skills and expertise, have a stronger voice, and 

more effectively influence the design of programs. 

The Friday Morning Collaborative, supported by The SCAN Foundation, has provided a 

forum for national aging and disability organizations to monitor state activity on MLTSS 

and duals integration, provide input into federal guidance, and communicate with state 

affiliates and advocates. At the state level, the California Collaborative for Long-Term 

Services and Supports was modeled on the Friday Morning Collaborative to provide a 

vehicle for aging and disability organizations in California to guide efforts on duals 

integration. In Massachusetts, Disability Advocates Advancing Our Healthcare Rights 

(DAAHR) similarly formed in response to state efforts on duals integration and MLTSS. 

DAAHR has been extremely effective in forming a statewide coalition of aging and 

disability organizations, developing a working relationship with the state, and influencing 

the design of the Massachusetts duals integration demonstration. 

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Loose coalitions, and elements of potential coalitions, exist in various other states 

pursuing duals integration and MLTSS programs. Statewide networks of aging and 

disability consumer organizations, including self-advocacy organizations, could be 

pulled together with modest structural funding and support. Consumer coalitions could 

develop plans and activities based on their particular strengths and needs for technical 

assistance to enhance their capacity to engage within their states. A national training 

and technical assistance infrastructure could also be established to promote 

communications across states, share promising practices, and provide ongoing 

technical assistance from topical experts across the country. 

 RECOMMENDATION #3: CMS should collaborate with the ACL on guidance

and oversight to ensure meaningful and ongoing stakeholder engagement of

consumer organizations.

Strong federal guidance and oversight is necessary for meaningful stakeholder 

engagement from consumer organizations. CMS has articulated high expectations for 

robust, meaningful stakeholder engagement in proposals from states pursuing duals 

integration demonstrations. Moreover, recent regulations concerning 1115 

demonstration waivers (which many states are pursuing for authority to implement 

MLTSS programs) strongly enhance transparency and opportunities for formal public 

comment. While some flexibility is needed to allow states to determine the best 

approaches to gaining input from stakeholders, remarkable differences exist across 

states in the level of engagement, responsiveness, and transparency. Stronger federal 

guidance is needed to set clearer expectations. The ACL could assist CMS in 

establishing guidance and oversight to ensure meaningful involvement from aging and 

disability stakeholders. 

Choice and Self-Determination 

The ID/DD field has a long history of advancing choice and self-determination for people 

with disabilities. Many of the most important advancements have come through 

32 
 

 

 

 

 

 

Medicaid HCBS to assist individuals in leading enviable lives. Home and communitybased services, self-direction and person-centered planning have been hard-fought 

victories for individuals with disabilities and their families. These advances must not be 

lost in the migration to managed care. 

 RECOMMENDATION #4: CMS should not allow states to carve out any 

institutional services and settings (including nursing facilities and ICFs/DD) 

from MLTSS. 

Full integration of acute, behavioral health, and all long-term services and supports 

maximizes the potential for better coordination. MCOs have incentives to improve care 

coordination and control costs when they are responsible for the full array of services a 

beneficiary might require. The nursing home industry in some states has lobbied to be 

excluded from duals integration demonstrations and MLTSS programs. However, this 

would severely limit the ability of states to design coordinated systems and achieve 

goals of rebalancing. It could also exacerbate an institutional bias for individuals with 

high needs for services and supports. If nursing facilities and other institutional services 

are not included in managed care contracts, health plans would only be responsible for 

community-based services. Managed care plans would have few incentives to prevent 

individuals from going into institutions or return individuals from institutions to the 

community. 

Some President’s Committee for People with Intellectual Disabilities members 

expressed concerns about MLTSS programs limiting access to ICFs/DD. Declines in the 

use of ICFs/DD have occurred in many states which have adopted MLTSS programs. 

Michigan, for example, no longer operates any ICFs/DD or public institutions. However, 

declines have steadily occurred nationally for decades in states with and without 

MLTSS programs due to state and federal leadership and desires of individuals with 

ID/DD and their families (Braddock et al., 2011). By including the full range of long-term 

services and supports in MLTSS programs, states can preserve a person-centered 

approach that promotes choice. Moreover, one of the greatest potential benefits of 

33 
 

 

 

 

MLTSS for individuals with ID/DD is to improve coordination across an array of services. 

If institutional services are not included, beneficiaries residing in these facilities lose the 

opportunity to benefit from tools to address health disparities and improve acute care 

health outcomes. 

If all elements of the system are not incorporated in MLTSS, individuals with the most 

significant medical and behavioral support needs may not be well-served. Not including 

all Medicaid-financed long-term services and supports provided in states, could lead to 

MCOs moving individuals with more significant need to institutional settings, regardless 

of their needs or desires. 

 RECOMMENDATION #5: CMS and states should promote person-centered

planning and options for self-directed supports in MLTSS.

As CMS, states, and health plans establish MLTSS contracts, they must ensure that 

person-centered planning and options for self-direction are available to all beneficiaries. 

Person-centered planning is a concept that originated within the field of ID/DD. At its 

core, it is an approach to designing service plans based on values of individual choice 

and self-determination. Person-centered planning is a process intended to identify the 

strengths, capacities, preferences, needs, and desired outcomes of individuals. The 

process recognizes that individuals, their families, and others selected by the person 

best know what is needed. When individuals and families are at the center, services are 

most efficient and successful. 

CMS has made great strides in clarifying expectations for person-centered planning 

through recent regulations concerning HCBS and the Community First Choice Option. It 

is particularly important that these standards are proactively carried to MLTSS 

programs. Many advocates are concerned that health plans interested in serving 

individuals with disabilities do not understand the history, meaning, and philosophy of 

person-centered planning. Many health plans entering the MLTSS environment come 

from a predominately medical-model orientation. Terms such as “patient-centered” 

34 
 

 

 

 

 

medical care or “interdisciplinary care teams” may sound similar to person-centered 

planning, but often mean wildly different things in practice. For instance, in some of the 

duals integration demonstration proposals states submitted, it was unclear whether 

development of service plans would even involve individuals receiving services, let 

alone be directed by them. 

Options for self-direction are also important to promote in MLTSS programs. Selfdirection is a broad term that refers to providing consumers more control over their 

services. CMS has provided different options within Medicaid to provide self-direction. 

One option allows individuals to hire, direct, train, and fire their own personal assistants 

and direct support professionals (known as employer authority). Another, more 

comprehensive option provides individuals with a flexible budget to purchase a range of 

goods and services to meet their needs (known as budget authority). Most often, 

individuals have chosen to use fiscal intermediaries to assist them with the financial 

management aspects of self-direction. 

At first, there may seem to be inherent conflicts between promoting self-direction and 

principles of managed care. However, providing options for self-direction can mutually 

benefit individuals, states, and health plans. An extensive body of literature, including 

research from the Cash and Counseling demonstrations, has documented positive 

outcomes from self-direction for individuals and their families (Brown, Carlson, Dale, 

Foster, Phillips, & Schore, 2007). Providing options for self-direction has relatively minor 

cost implications and could produce savings associated with reduced administrative 

costs and the ability of individuals and families to allocate resources more efficiently. 

Finally, providing options for self-direction can assist states with gaining buy-in from 

individuals with disabilities and families. Of the 16 states that currently have MLTSS 

programs, 12 have offered options for self-direction, and four include budget authority in 

their models. The Wisconsin Family Care Program, for example, was designed on a 

framework of providing greater self-direction to individuals with ID/DD and their families. 

35 
 

 

 

 

 

 

 RECOMMENDATION #6: CMS should encourage states and health plans to

reinvest savings from MLTSS programs to address unmet needs and waiting

lists.

While research on cost savings is mixed, it is reasonable to hypothesize that if MLTSS 

programs are well-designed they could lead to savings through better coordination of 

acute and long-term services and supports. Some states have considered limiting the 

amount of profits that health plans can make (by putting in place mechanisms known as 

Medical Loss Ratios). Given the extent of unmet needs for individuals with ID/DD, states 

and health plans should be strongly encouraged to reinvest savings back into 

community-based services. Not all states maintain or report accurate waiting list data. 

However, according to available data, waiting lists for 1915(c) HCBS waiver programs 

have more than doubled over the past decade (Ng, Harrington, Musumeci, & Reaves, 

2012). In 2011, there were 511,174 individuals in 38 states on waiver waiting lists. 

Approximately 62% (316,673) were individuals with ID/DD. 

Some states have also encouraged health plans to provide additional benefits beyond 

those provided in Medicaid. For example, some health plans have provided additional 

prevention, dental, respite, wheelchair repair, and other services. Typically, plans have 

provided benefits that might produce savings or attract consumers who have a choice of 

plans. Opportunities for added benefits could provide self-advocates and families with 

tools to enhance systems of self-advocacy and flexible family supports, which have 

been difficult to fund through Medicaid. Health plans and states should also consider 

reinvesting savings in other sorely needed areas to promote community-living, such as 

housing, transportation, and the direct support workforce. 

 RECOMMENDATION #7: CMS and states should ensure that individuals with

ID/DD and their families have accessible information and assistance from

independent navigators to help them understand their enrollment choices and

rights.

36 
 

 

 

 

 

To fully exercise choice and self-determination, individuals with ID/DD and their families 

must have access to understandable information and assistance to navigate complex 

managed care systems. Enrollment into duals integration demonstrations or MLTSS 

programs may be voluntary, mandatory, or have a passive (or “opt-out”) enrollment 

process. In most states, individuals will have a choice of health plans to select from. The 

transition from a traditional fee-for-service system into managed care can be extremely 

complicated and confusing. Yet, some states have elected to notify individuals only by 

mail. This is grossly inadequate for individuals with cognitive disabilities, individuals with 

limited reading ability, and individuals from diverse cultural backgrounds. 

States must ensure that beneficiaries fully understand the transition to managed care 

and their enrollment options, rights, and responsibilities (Prindiville & Burke, 2011). One 

way states can ensure this is through independent enrollment navigators. A variety of 

community-based organizations could assist with filling these roles, such as local 

chapters of The Arc, other non-profit disability organizations, or Developmental 

Disabilities Act partners. One of the most important requirements is that they are 

conflict-free (in other words, are not providers of services or tied to managed care 

plans). 

Assistance is also needed from community-based organizations in aggressive outreach 

and education efforts, particularly through organizations that can reach, and are trusted 

by, underserved communities. All materials must be available in a variety of accessible 

formats, including cognitively accessible language and language appropriate for the 

cultural and linguistic groups represented in the state. 

 RECOMMENDATION #8: The Department of Education, in collaboration with 

the Department of Health and Human Services and Social Security 

Administration, should assist students with disabilities and their families 

through the transition process as students move from high school to adult life 

in understanding and navigating HCBS and MLTSS. 

37 
 

 

 

 

A long-standing issue for students with ID/DD and their families is the lack of 

information they receive during transition from high school about accessing and 

navigating the adult service and support systems. Youth with ID/DD and their families 

too often leave high school without connections to state agencies overseeing 

developmental disabilities services. They are not provided with accurate information 

about Medicaid as a lifeline to community living, including community-based 

employment services. Realistic information about their choices, options, and waiting 

lists for services and supports should be provided. 

Having experienced a right to educational services, the lack of rights and available 

options from community-based services in the adult service system can come as a 

shock. Therefore, necessary connections are needed to self-advocacy organizations, 

Centers for Independent Living, non-profit disability organizations, and Developmental 

Disabilities Act partners. MLTSS provides one more layer of complexity for individuals 

with ID/DD trying to transition successfully from high school. Efforts should be launched 

to educate, connect, and assist youth with disabilities and their families in navigating the 

community-based services and supports system during the transition process. 

Consumer Protections and Rights 

The President’s Committee for People with Intellectual Disabilities and many advocates 

are concerned about the speed and scope with which states are pursuing MLTSS. Over 

the next couple years, hundreds of thousands of individuals with disabilities could be 

enrolled in MLTSS programs. Due primarily to budget pressures, many states are 

rushing to mandate statewide enrollment rather than providing consumers with choice, 

slowly phasing in programs, and learning from demonstrations and pilots. Many states 

are considering contracting with large, for-profit health plans, the majority of which have 

virtually no experience serving individuals with disabilities, especially individuals with 

ID/DD. Moreover, there are significant concerns about adequate state capacity to 

effectively oversee MLTSS programs. Timelines will vary based on existing state 

capacity and infrastructure. However, many states are already delaying initial plans as 

38 
 

 

 

 

 

 

 

they more fully realize the complexities and challenges involved. It takes resources, 

planning, and time to get it right. 

 RECOMMENDATION #9: CMS should not approve MLTSS programs without

strong and transparent assessment of state and plan capacity and readiness

to adequately serve individuals with ID/DD and their families.

Strong CMS oversight is needed in the evaluation of state capacity and readiness to 

move forward. State proposals should not be approved without robust and meaningful 

consumer stakeholder engagement, strong consumer protections, and adequate state 

infrastructure and capacity. State capacity to oversee MLTSS programs includes having 

adequate staff with qualifications in core functions, such as: program management, 

contract monitoring, provider network adequacy, beneficiary rights and education, and 

rate setting (Lipson, Libersky, Machta, Flowers, & Fox-Grange, 2012). Information 

technology (IT) systems must also be in place to effectively monitor contracts and 

performance. 

In addition to state readiness, it is essential to assess plan readiness. States and CMS 

should require health plans to demonstrate their ability to serve individuals with ID/DD 

through adequate networks and partnerships with the developmental disabilities 

network. Given the range of diverse needs within the population of individuals with 

developmental disabilities, health plans must be able to demonstrate robust networks of 

primary and specialty care that are properly trained in serving individuals with ID/DD. It 

is essential to put in place protections to avoid disruptions in care and services by 

allowing individuals to continue receiving services from current providers during the 

transition to MLTSS programs (commonly referred to as “continuity of care” 

requirements). Plans should build networks based on the needs of individuals with 

ID/DD, incorporating existing providers of home and community-based services and 

maximizing consumer choice. Health plans should also be required to form consumeradvisory boards that consist of a majority of beneficiaries with disabilities and families. 

39 
 

 

 

 

 

 RECOMMENDATION #10: CMS should require states to have independent 

systems in place to assist consumers with complaints, advocate on their 

behalf, and monitor MLTSS programs for systemic problems (often referred to 

as ombuds programs). 

As states implement MLTSS programs there will be systemic challenges to confront and 

address as they mature. In order to meet these challenges and protect the rights of 

consumers, federal requirements are needed for states to establish independent, 

conflict-free ombuds programs. The term “ombuds” or “ombudsman” refers to an 

independent, external advocate that represents the needs and perspectives of 

beneficiaries. A coalition of twelve national aging and disability consumer organizations 

has developed a white paper outlining the following three core functions of an ombuds 

program (NSCLC, 2012): 

1) Individual Assistance: The primary role of the ombuds programs should be to 

give individual members assistance in navigating the complexities of 

managed care. This role includes assisting consumers with understanding 

their rights and responsibilities, accessing benefits, and appeals at all levels 

of plan denial, reduction, or termination of service decisions. 

2) System Monitoring and Reporting: The ombuds should provide policymakers 

and stakeholders an “on the ground” beneficiary perspective on how the 

demonstration or waiver is performing. The program can identify areas where 

individual problems demonstrate broader issues with system design or 

implementation. 

3) Consumer Education and Empowerment: The ombuds must reach out to, and 

be a resource for beneficiaries, family caregivers and advocates. It is 

particularly important that the ombuds establish connections with hard to 

reach beneficiaries including, but not limited to, those who have limited 

English proficiency, are homeless, are homebound, lack literacy skills, have 

communication impairments, or are living in institutions. 

40 
 

 

 

 

 

Depending on existing state infrastructure, a variety of different entities could best fulfill 

ombuds functions. Given the range of diverse populations that will be served in MLTSS 

programs, a collaborative partnership approach makes sense. For individuals with 

ID/DD, the existing network of Protection and Advocacy Associations (P&As) provides a 

logical platform upon which to build. Self-advocacy organizations, centers for 

independent living, disability rights organizations, legal services, and other non-profit 

organizations might also fulfill ombuds functions. 

Models of ombuds programs exist in states such as California, Hawaii, New York, 

Vermont, and Wisconsin. States have taken various approaches. For example, in 

Wisconsin the P&A, Disability Rights Wisconsin, operates the ombuds program for 

individuals under 60 participating in MLTSS programs. In Hawaii, the Hilopa Family to 

Family Health Information Center provides limited ombuds functions. In other states, 

legal services organizations and coalitions of local and state organizations have fulfilled 

ombuds roles. 

One of the essential requirements of ombuds programs is independence. An ombuds 

should be located outside the state agency overseeing the MLTSS program and should 

not be affiliated with health plans (it should be conflict-free). It is also critical for the 

ombuds program to receive adequate funding. Existing structures such as P&As and 

legal services organizations are already stretched thin. Without adequate additional 

funding they will not be able to effectively fulfill added ombuds roles. 

Ombuds programs should be considered an essential part of the state infrastructure 

necessary to establish a successful MLTSS program. However, avenues for additional 

federal support should be pursued. Some states, such as Vermont, have used Medicaid 

funding to cover some duties of ombuds programs. Recently, the Center for Medicare 

and Medicaid Innovation (CMMI) within CMS announced a funding opportunity for 15 of 

the states pursuing duals integration demonstrations to allow them to build capacity, 

including using funding to establish ombuds programs. Funding for additional states is 

needed. 

41 
 

 

 

 

 

 

 RECOMMENDATION #11: The ACL should work with federal and state partners

to promote supported decision making, self-determination, and self-advocacy,

as well as avoiding inappropriate use of guardianship in MLTSS programs.

Finally, as more states integrate acute and long-term services and supports, there are 

concerns about MLTSS programs contracting with health plans that historically come 

from a “medical-model” orientation. Health plans with little experience serving 

individuals with ID/DD will not understand how to best support self-determination and 

decision-making. There are concerns that health plans could urge the use of 

guardianship out of convenience or unfamiliarity with less restrictive alternatives, such 

as supported decision-making models. Ombuds programs could monitor and provide a 

level of protection against this from occurring. However, proactive measures should also 

be taken. For example, states could require training for health plans and networks on 

enhancing self-determination and supported decision making. Quality measures should 

also be established to promote supported decision-making and involvement of 

individuals with ID/DD in self-advocacy. 

Quality Measurement, Data Collection, and Research 

Quality measurement and monitoring activities are powerful tools for consumers and 

states. While strong HCBS quality systems are important in traditional fee-for-service 

Medicaid, quality measures take on increased significance in a MLTSS environment 

because they are often tied to accountability and payment for MCOs. Quality measures 

and reporting requirements can help: 

• Ensure consumer protections, identify problems, and enhance plan

performance

• Provide consumers with information to make choices about plan selection

42 
 

 

 

 

 

• Align payments, incentives, and penalties to meet desired goals –such as

promoting options for self-direction, rebalancing, community employment, or

strengthening the direct support professional workforce

 RECOMMENDATION #12: CMS should work with the ACL and key

stakeholders to issue guidance on a core set of HCBS quality and reporting

measures that are appropriate to specific needs of people with ID/DD and

focus on overall quality-of-life outcomes.

Currently there is very little federal guidance to states on quality measures for MLTSS 

programs. While CMS has required a core set of quality measures on acute care for the 

duals integration demonstrations, core measures for HCBS have not been required. 

States have taken vastly different approaches to measuring HCBS quality in MLTSS 

programs. Figure 8 provides examples of HCBS quality measures currently being used 

by states with MLTSS programs. The majority of HCBS measures states have used are 

process and structural measures (for example, the timeliness of receiving services). 

More challenging to measure, but equally important to achieving goals of HCBS, are 

person-centered outcomes, such as consumer experience and quality-of-life outcomes. 

Given the great diversity among HCBS programs and populations of individuals with 

disabilities, developing guidance on a core set of measures is challenging. Yet, over the 

past several decades the field has moved towards a more common vision for 

community living. CMS has sought to achieve greater consistency through recent 

initiatives, guidance, and regulations. For example, a much more consistent vision of 

person-centered planning has emerged across different HCBS options, including new 

provisions in the Affordable Care Act. 

43 
 

FIGURE 8: Examples of HCBS Quality Measures in Existing MLTSS 

Programs, 2012 

• Timeliness of completing level of care

assessments

• Timeliness of initiating HCBS

• Turnover among interdisciplinary team

members

• Receipt of services authorized

• Person-centeredness of service

planning

• Institutional admissions

• Successful community transitions

• Participation in volunteer or paid work

• Participation in self-directed services

Saucier, P., Kasten, J., Burwell, B., & Gold, L. (2012) 

• Member satisfaction

• Member experience

• Service plan audits

• Observation of service planning and

coordination

• Review and audit of LTSS provider

network availability

• Comparison of LTSS provider claims

paid and encounters submitted

• Review of LTSS utilization

• Review of critical incidents

• In-person interviews with members

Aging and disability consumer groups have found a great deal of common ground in 

such areas as rebalancing, self-direction, community employment, and the rights of 

individuals to live in the most integrated setting appropriate to their needs. While there 

are some differences between populations, common elements of an overall vision for 

HCBS exist and are seen in such national efforts as the AARP Scorecard (Reinhard, 

Kassner, Houser, & Mollica, 2011) and the National Core Indicators Project (NASDDDS 

& HSRI, 2011). 

 RECOMMENDATION #13: CMS should only approve MLTSS proposals that

include quality measures and reporting (as indicators) that ensure access to

competent, stable, and well-trained direct support professional workforce.

44 
 

 

 

 

Availability of an adequately trained and compensated direct support professional 

workforce is an essential component of quality. The ability to find, keep and retain 

qualified direct support professionals is a major challenge for individuals with 

disabilities, their families, and service providers. Annual turnover rates for direct support 

professionals serving individuals with ID/DD average around 50% (Hewitt, Lakin, & 

Larson, 2006). Demand for direct support professionals will increase in coming decades 

due to the aging of the U.S. population, including aging of individuals with ID/DD and 

individuals living with aging family caregivers. The developmental disabilities field has 

launched initiatives to enhance training of direct support professionals, such as the 

College of Direct Supports and the CMS’ sponsored Direct Service Workforce Resource 

Center, and to improve recruitment and retention. However, major factors driving high 

turnover and low retention are low wages and benefits for direct support professionals 

(ANCOR, 2009). 

MLTSS could provide opportunities to improve data collection and incentives to address 

workforce issues. CMS should require minimum, baseline data on workforce that 

includes wages and benefits, work hours, turnover, training, and availability of workers 

to meet the needs of individuals with disabilities and their families (Edelstein & Seavey, 

2009). Quality measures and performance incentives for health plans could be designed 

around these measures to achieve outcomes, such as reduced turnover and increased 

availability of trained direct support professionals. In addition, as previously mentioned, 

if savings are achieved through MLTSS programs, states and health plans should 

consider reinvesting savings into infrastructure to better recruit and retain direct support 

professionals. States could also consider investing in infrastructure to support selfdirected options for individuals with disabilities and their families to hire workers, such 

as fiscal intermediaries and registries of available direct support professionals. 

The Administration for Community Living is well positioned to work with key 

stakeholders to assist CMS in developing guidance on core HCBS quality measures for 

MLTSS. Attention must be given to ensure that core measures are appropriate across 

different HCBS populations. Supplemental measures may be necessary to address 

45 
 

 

 

 

 

 

 

 

 

needs of specific subpopulations, such as individuals with ID/DD. Moreover, balance is 

needed in promoting greater consistency across states, while maintaining a level of 

flexibility for states to select appropriate measures based on their unique needs and 

desired outcomes for programs. 

 RECOMMENDATION #14: CMS should work with the ACL and key

stakeholders to develop measures to fill gaps in HCBS quality measurement,

for both the unique needs of specific populations such as individuals with

ID/DD as well as measures that apply to all populations.

Unfortunately, significant gaps currently exist in the availability of valid and reliable 

HCBS quality measures. The National Quality Forum (NQF) is the leading non-profit 

organization that endorses national measures. The NQF recently established a 

workgroup on dual eligible beneficiaries that examined 148 potential HCBS measures 

from various sources, including an extensive environmental scan conducted by the 

Agency for Healthcare Research and Quality (AHRQ) at the request of Congress (NQF, 

2012). The majority of measures did not meet scientific standards and criteria for 

approval across populations. The NQF identified some promising measures, highlighted 

important quality domains and gaps, but has not yet endorsed any HCBS quality 

measures. The void of approved HCBS quality measures is extremely troublesome 

given the rapid pace at which states are venturing into MLTSS. 

Work is beginning at the federal level to develop measures to meet standards for NQF 

endorsement. CMS, in partnership with AHRQ, is working with contractors to develop 

and test a new HCBS Experience Survey. The survey is intended for use across all 

populations of individuals with disabilities that use HCBS. Versions will be made 

available in English and Spanish. The survey will be field tested across the country 

using a combination of phone and face-to-face interviews. Careful attention was paid in 

designing the survey to fit with other surveys that are frequently used to measure 

consumer experience by managed care health plans –known as the Consumer 

Assessment of Healthcare Providers and Systems (CAHPS) family of measures. 

46 
 

 

 

 

 

 

 

 

The survey measures quality of services received from direct support professionals and 

case managers. It also measures quality in areas of transportation, personal safety, 

community inclusion, and empowerment. In addition, supplemental measures are being 

developed on employment which could provide a useful tool for advocates to promote 

community employment. Following testing, the goal is to seek NQF approval, which will 

greatly increase the likelihood of adoption by states and plans. 

As the HCBS Experience Survey is further developed, it is important for the ID/DD 

community to have continued input. One concern that has been raised by some 

advocates is lack of allowance for surrogate or proxy respondents. While consumers 

should always be the primary respondents, not providing alternative methods for data 

collection could exclude a significant number of individuals with cognitive disabilities. 

The ID/DD research community, including the network of University Centers for 

Excellence in Developmental Disabilities (UCEDDs), has extensive experience 

designing surveys for individuals with ID/DD and family members that maximize 

consumer input and could be of assistance in addressing this issue. 

In addition, attention must be paid to the infrastructure and resources that will be 

needed to administer consumer surveys. Self-advocacy and disability organizations 

could play key roles in this area. In the mental health system, at least four states have 

developed quality measurement systems that use independent peer-to-peer consumer 

organizations as interviewers. Some state developmental disabilities service systems 

have hired and trained self-advocates with ID/DD to assist with HCBS quality systems. 

For example, Vermont contracts with the statewide self-advocacy organization, Green 

Mountain Self-Advocates, to provide consumer input related to their MLTSS program. 

Development of the HCBS Experience survey is a significant step forward. However, 

much stronger federal investment in HCBS quality measurement is urgently needed if 

MLTSS programs are to succeed. The quality structures and entities that currently exist 

in the managed care environment predominately focus on acute care and come from a 

47 
 

 

 

 

“medical model” orientation. The ID/DD community can play a leadership role in 

educating and transforming these quality systems to adopt a more person-centered, 

non-medical approach to measuring quality and outcomes. Two promising areas to start 

with are the National Core Indicators and Council on Quality and Leadership. 

The National Core Indicators (NCI) project is a collaborative effort between the National 

Association of State Directors of Developmental Disabilities Services and the Human 

Services Research Institute. The NCI are a nationally recognized set of performance 

and outcome indicators for developmental disabilities service systems that have been in 

use since 1997. The framework includes approximately 100 performance and outcome 

indicators organized across five broad domains: 

• Individual Outcomes

• Health, Welfare, & Rights

• Staff Stability & Competency

• Family Outcomes

• System Performance

Data is collected from multiple sources. An Adult Consumer Survey is conducted faceto-face with service recipients and their families or other representatives. In addition, 

three different versions of Family Surveys are administered through the mail to gain the 

perspectives of family members and guardians on quality. Provider surveys and 

systems data are also used. The NCI framework is currently used by 34 states, with 

AIDD providing resources to expand NCI to all states by 2016. While it has been 

primarily used at the state level, versus a tool for use at the plan level, potential exists to 

explore its use in MLTSS programs. 

The Council on Quality and Leadership (CQL) is a non-profit organization dedicated to 

the definition, promotion, measurement and improvement of personal and community 

quality of life for people with disabilities, people with mental illness, and older adults. A 

central focus of CQL’s work over the past 20 years has been development of a set of 

48 
 

 

 

 

 

 

valid and reliable measures of individual quality of life known as Personal Outcome 

Measures. The measures serve as a tool for evaluating personal quality of life, defined 

by individuals, and the degree to which organizations support individualized outcomes. 

CQL has accredited several hundred community-based organizations serving persons 

with ID/DD and other disabilities. The Personal Outcome Measures have been primarily 

used as a quality improvement tool to assist organizations and service providers. 

However, a great deal can be learned from its approach to measuring person-centered 

outcomes. Potential application within a MLTSS environment should be explored. 

 RECOMMENDATION #15: The ACL should convene federal partners,

researchers, states, health plans, and others to promote external evaluations

and research on MLTSS.

As previously noted, limited research exists on outcomes of MLTSS programs for 

individuals with disabilities and their families. As states move forward, strong 

investments in research and evaluation are sorely needed at both state and federal 

levels. Independent external evaluations are necessary at the state level to closely 

monitor and assist stakeholders with improvements over time. Successful development 

of MLTSS will require information technology (IT) improvements for data collection. 

CMS, states, and health plans should work together to make as much data as possible 

available to researchers, while protecting confidentiality and rights, in order to promote 

independent research on the outcomes of MLTSS. Moreover, significant opportunities 

exist for health plans to develop partnerships with disability researchers to explore data 

on health disparities and develop evidence-based interventions to promote health and 

wellness. 

The ACL can play a leading role in bringing together multiple sectors to promote 

research on MLTSS. The ACL could convene states, health plans, philanthropic 

foundations, consumer stakeholders, and federal agencies to develop partnerships and 

a research agenda. The Administration on Intellectual and Developmental Disabilities, 

49 
 

 

the University Centers for Excellence in Developmental Disabilities (UCEDDs) and 

Councils on Developmental Disabilities could provide networks to enhance evaluations 

and research. Federal agencies such as the National Institute for Disability and 

Rehabilitation Research (NIDRR), Agency for Health Care Research and Quality 

(AHRQ), National Institutes for Health (NIH), and the Centers for Disease Control and 

Prevention (CDC) could play key roles in advancing a strong research agenda on 

outcomes of MLTSS. 

50 
 

 

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-

CASE STUDIES OF MANAGED LONG-TERM SERVICES AND SUPPORTS 

PROGRAMS SERVING INDIVIDUALS WITH ID/DD 

State officials and consumer advocates from Arizona, Michigan, and Vermont briefed 

the President’s Committee for People with Intellectual Disabilities on MLTSS programs 

in their states. Case studies below were informed by their presentations, follow up 

consultation, and information from Gettings (2009), Health Management Associates 

(2010), and Saucier, Kasten, Burwell, & Gold (2012). 

Arizona Long-Term Care System (ALTCS) 

Arizona did not begin participating in the Medicaid program until 1982. Their entire 

Medicaid program is operated under an 1115 Demonstration waiver, based on a 

statewide mandatory managed care structure known as the Arizona Health Care Cost 

Containment System (AHCCCS). In 1988-1989 long-term services and supports were 

phased in under a program known as the Arizona Long Term Care System (ALTCS). 

The ALTCS is divided into two populations: 1) older individuals and individuals with 

physical disabilities; and 2) individuals with ID/DD. For older individuals and individuals 

with physical disabilities, Arizona contracts with three managed care entities; tribal 

services are provided on a fee-for-service basis. For individuals with ID/DD, the state 

Medicaid agency (AHCCS) 

contracts with the state 

developmental disabilities service 

agency, the Department of 

Economic Security/Division of 

Developmental Disabilities 

(DES/DDD). DDD negotiates a 

managed care contract that outlines 

its responsibilities in providing all 

acute, behavioral health, and long57 

 This is a self directed system, thus consumers 

can choose an agency to provide services or 

use a fiscal intermediary; our state prides itself 

on consumer choice. We do not have any 

waiting lists, however we can have network 

capacity issues in certain parts of our state 

which can be an issue anywhere. The state 

coordinates care between the medical and 

community based systems. 

Maureen Casey (Parent Advocate from 

Arizona) 
 

 

 

term services and supports. DDD subcontracts with health plans to deliver acute care. 

Behavioral health services are provided through regional agencies under an interagency 

agreement. 

Long-term services and supports for people with ID/DD are provided in a managed care 

model in which the DDD contracts with providers, including HCBS service providers. 

The DDD employs case managers, or Support Coordinators, who are accountable both 

to DDD and AHCCCS. Support Coordinators are responsible for coordinating all 

services that are implemented across systems –acute, behavioral health, and long-term 

services and supports. HCBS services in Arizona are an entitlement in state statute for 

all individuals with ID/DD at “immediate risk of institutionalization.” 

Families report a robust service delivery system with a focus on consumer choice. 

Because the state legislature limits the ability of state employees to direct consumers to 

certain contracted providers, families rely on providers, other families, and advocacy 

organizations to make choices. Supporting individuals to enter the workforce and to live 

in the community with supports are major goals of the DDD system. 

Michigan Managed Specialty Services and Supports Program (MSSSP) 

Michigan began implementing its managed care program in 1998. CMS authority for the 

Michigan Managed Specialty Services and Supports Program (MSSP) is granted under 

a concurrent 1915(b) and 1915(c) HCBS waiver. The program is statewide and 

mandatory. The state contracts with regional Prepaid Inpatient Health Plans (PIHPs). 

The foundation of the PIHP system is a network of county-based entities, Community 

Mental Health Services Programs, which serve individuals with mental illness, 

substance abuse, and ID/DD. There are currently 18 PIHPs across the state serving a 

single county or group of counties. 

PIHPs are responsible for all behavioral health, substance abuse, case management, 

and LTSS services, including HCBS waiver services for individuals with ID/DD. 

Supports Coordinators are used to help coordinate acute, behavioral, and long-term 

58 
 

 

 

 

 

 

services and supports –not just the supports and services funded through their 

managed care entity. According to advocates, managed care for acute care has 

improved access to doctors and medical care, including specialists, for those who utilize 

Medicaid. 

PIHPs are responsible for serving all eligible people in their service area regardless of 

their “level of care,” as long as the services are medically necessary. Advocates in 

Michigan have fought for a broad definition of medical necessity to avoid denial of 

needed services and supports for individuals with disabilities. Use of person-centered 

planning has been required by Michigan law since 1993. Home and community-based 

services have improved and expanded. The 1915(b) waiver provides flexible services 

and supports to promote community inclusion, participation, and productivity under this 

definition of medical necessity. There is no waiting list for 1915(c) HCBS waiver 

services for individuals with ID/DD. Approximately 57% of individuals with ID/DD reside 

with family; and supports are provided to families. Michigan no longer operates any 

public institutions or private ICFs/DD for individuals with ID/DD. 

The state sets the direction for delivery of 

services and supports with strong 

stakeholder involvement from advocates. 

Advocates assisted the state with the move 

towards managed care to ensure minimal 

disruptions in care for individuals. Current 

providers were maintained until the person 

receiving services and their supporters 

decided, in a person-centered planning 

process, that they wanted another provider or 

to be supported differently. Michigan has an 

extensive advocacy network, independent of 

the service system, which provides individual 

advice, guidance, and assistance with 

We would urge that persons with 

ID/DD, their families and 

representatives be very alert and 

immediately get active. It is critical to 

get involved in the discussion, 

planning, and implementation of 

managed care. Insist on regular 

communication, both formal and 

informal. Offer to help with anything 

including details. Not only is that 

where the devil is, it is usually what 

determines how and where the 

system touches or affects individuals. 

Coalesce with others, including those 

who represent other populations likely 

to be affected, and providers. 

Dohn Hoyle, Executive Director, The 

Arc of Michigan 

59 
 

 

 

 

 

 

 

 

complaints and appeals. The rights of service recipients are written in statute and 

extensive rules govern the operation of Recipients Rights Offices. Regional entities who 

manage Medicaid funding for supports and services are also required to have a 

“Customer Service” department or office, which have been staffed by individuals who 

receive services and family members. This system provides assistance in navigating or 

negotiating the system. 

The state reports regularly by region on quality and performance monitoring, such as 

penetration rates, how quickly individuals receive services following initial requests, and 

how many individuals are working at minimum wage or above and hours of work. This 

data is public so anyone can compare performance across regions. It also goes to the 

state Quality Improvement Council. Advocacy organizations sit on the Council, which 

sets acceptable standards to be met by PIHPs. Information on quality also goes to the 

Developmental Disabilities Practice Improvement Team, which similarly includes 

representation of local advocacy organizations. 

Vermont Global Commitment Waiver 

Vermont was approved for an 1115 Medicaid demonstration waiver in 2005 known as 

the Vermont Global Commitment to Health Waiver. The state’s interest in applying for 

the waiver was driven by desire for flexibility. The state sought to gain greater flexibility 

to prioritize services, reduce administrative burdens associated with separate 

authorities, and capture savings for reinvestment in flexible supports. The state 

Medicaid agency became the managed care entity. In exchange, the state agreed to 

comply with federal regulations for Medicaid MCOs and to assume a level of financial 

risk under a negotiated global federal spending cap. 

Services for individuals with ID/DD were included in the Global Commitment waiver. 

Prior to the Global Commitment Waiver, Vermont was already a leader in providing 

community-based services to individuals with ID/DD. The state had also already moved 

away from fee-for-service payments. The Global Commitment waiver provided the state 

60 
 

 

 

 

with additional flexibility to expand covered populations and to tailor services to certain 

eligibility and priority determinations. 

Vermont has a unique statewide plan (known as the State System of Care Plan) that 

clearly details the values, vision, and method for providing developmental disabilities 

services. Eligible individuals may receive targeted case management, the bridge 

program (care coordination for children), and flexible family funding . HCBS services are 

funded using priorities based on a person’s circumstances. 

1. Health and Safety: Ongoing, direct supports and/or supervision are needed to

prevent imminent risk to the individual’s personal health or safety. (Priority is for

adults age 18 and over.)

2. Public Safety: Ongoing, direct supports and/or supervision are needed to prevent

an adult who poses a risk to public safety from endangering others. (Priority is for

adults age 18 and over.)

3. Preventing Institutionalization – Nursing Facilities: Ongoing, direct supports

and/or supervision are needed to prevent or end institutionalization in nursing

facilities when deemed appropriate by Pre-Admission Screening and Resident

Review (PASRR). (Priority is for children and adults.) Services are legally

mandated.

4. Preventing Institutionalization – Psychiatric Hospitals and ICF/DD: Ongoing,

direct supports and/or supervision needed to prevent or end long term stays in

inpatient public or private psychiatric hospitals or end institutionalization in an

ICF/DD. (Priority is for children and adults.)

61 
 

 

 

 

 

 

 

 

 

 

-

-

- -

-

-

-

5. Employment for High School

Graduates: Ongoing, direct supports

and/or supervision needed for a high

school graduate to maintain

employment upon graduation. (Priority

for adults age 19 and over.)

6. Parenting: Ongoing, direct supports

and/or supervision needed for a parent

with developmental disabilities to

provide training in parenting skills to

help keep a child under the age of 18 at

home. Services may not substitute for

regular role and expenses of parenting;

maximum amount is $7,800 per person

per year. (Priority is for adults age 18

and over.)

Vermont has no waiting lists for HCBS 

services for individuals with ID/DD who meet 

funding eligibility criteria. This has primarily 

occurred through flexibilities to target services 

to priority needs. However, it does not mean 

there are no unmet needs. All eligible 

individuals and their families receive some 

services and supports. Some individuals 

receive higher levels of services and supports 

if they meet a funding priority. 

As other states convert to a managed 

care system, the key is nothing about 

us without us. To build a system that 

meets the needs of people with 

intellectual and developmental 

disabilities, they need to be involved 

at all levels. One way to measure the 

strength of a system is to look at the 

strength of the state’s self advocacy 

movement. 

Self Advocacy in Vermont is strong, 

and diverse. Despite being a rural 

state, we have 21 local groups with 

600 plus active members. We are not 

just any organization; we have a 

purpose. Our purpose is to strengthen 

our peer connections. It is important to 

have a peer to peer connection 

because you learn how much you 

have in common. You get the honest 

truth from your peers. When 

information comes from others, it can 

be sugar coated; the environment can 

feel too controlling or biased. When 

you get involved in self advocacy, you 

realize you are not alone when facing 

tough times.” 

Max Barrows, Green Mountain Self

Advocates 

Vermont has also been a leader in supporting community employment. The number of 

individuals with ID/DD receiving community employment supports in Vermont is four 

times the national average. 

62 
 

 

 

 

 

 

 

 

 

 

 

GLOSSARY AND ACRONYMS 

Managed Care Terms: 

Capitation or Capitated Rate: “Capitation” means a fixed payment. Managed care 

organizations receive a fixed amount per person each month to cover all services 

in a contract. This is called their “capitated rate.” 

Carve Out: “Carve out” means exclude. A lot of times people say individuals with ID/DD 

are “carved out” or home and community-based services are “carved out.” This 

means they are not included in the MLTSS program. 

Continuity of Care: “Continuity of Care” means that people can continue to see their 

current doctor or get services from their current provider. When states do 

contracts with managed care organizations they can require them to allow this. 

Dual Eligible Beneficiaries: “Dual eligibles” are individuals that receive both Medicaid 

and Medicare. 

Duals Integration: “Duals integration” means trying to make Medicaid and Medicare 

work better together. Sometimes it means combining Medicaid and Medicare 

payments into one payment. 

Fee-for-Service: “Fee-for-service” means reimbursing doctors and providers for services 

they provide. This is the traditional way Medicaid has worked. Individuals with 

Medicaid can go to any qualified doctor or provider to get services. 

Managed Care Organization: A managed care organization (MCO) is an entity that 

states contract with to provide health care and/or long-term services and 

supports. Usually this is a health plan. Although, sometimes it can be a state 

agency or local/regional agency. 

Managed Long-Term Services and Supports: Managed-Long-Term Services and 

Supports (MLTSS) is a term that refers to financing and delivering long-term 

services and supports based on principles of managed care. Typically states sign 

63 
 

a contract with a managed care organizations to provide all services for a fixed 

per person capitated rate. 

Ombuds or Ombudsman Programs: “Ombuds” or “Ombudsman” programs are 

independent advocates that can assist individuals with protecting their rights in 

MLTSS programs. 

Passive or “Opt-Out” Enrollment: “Passive enrollment” enrollment means that 

individuals are automatically enrolled in MLTSS programs. However, they have 

the option to disenroll, or “opt-out.” 

Frequently Used Acronyms: 

ACL Administration for Community Living 

AIDD Administration on Intellectual and Developmental Disabilities 

CMS Centers for Medicare and Medicaid Services 

HCBS Home and Community-Based Services 

ICF/DD Intermediate Care Facility for Individuals with Developmental Disabilities 

ID/DD Intellectual and Developmental Disabilities 

MLTSS Managed Long-Term Services and Supports 

MCO Managed Care Organizations 

64 
PRESIDENT’S COMMITTEE FOR PEOPLE WITH INTELLECTUAL DISABILITIES 

Citizen Members: 

James T. Brett, Chair 

Annette McKenzie Anderson 

Peter H. Bell 

Peter V. Berns 

Clay Boatright 

Jack Martin Brandt 

Micki Edelsohn 

Ann Hardiman 

Alison A. Hillman de Velásquez 

Carl M. La Mell 

Julie Ann Petty 

Lauren Elizabeth Potter 

Carol Quirk 

Susana Ramirez 

Deborah M. Spitalnik 

Lillian Sugarman 

Liz Weintraub 

Carol Wheeler 

Sheryl White-Scott 

Ex-Officio Members/Representatives: 

The Honorable Eric H. Holder 

Attorney General of the US Department of Justice 

Represented by: 

Mark Gross 

Deputy Chief, Appellate Section 

Civil Rights Division 

US Department of Justice 

The Honorable Kenneth L. Salazar 

Secretary of the US Department of the Interior 

65 
Represented by: 

Darren Cruzan 

Deputy Director 

Office of Justice Services 

US Department of the Interior 

The Honorable Rebecca Blank 

Acting Secretary of the US Department of Commerce 

Represented by: 

Suzan J. Aramaki 

Director 

Office of Civil Rights 

US Department of Commerce 

The Honorable Hilda Solis 

Secretary of the US Department of Labor 

Represented by: 

Kathy Martinez 

Assistant Secretary 

Disability Employment Policy 

US Department of Labor 

The Honorable Kathleen Sebelius 

Secretary of the US Department of Health and Human Services 

Represented by: 

Sharon Lewis 

Acting Principal Deputy Administrator 

Administration for Community Living 

US Department of Health and Human Services 

The Honorable Shaun L. S. Donovan 

Secretary of the US Department of Housing and Urban Development 

Represented by: 

Michelle Aronowitz 

Deputy General Counsel for Enforcement and Fair Housing 

US Department of Housing and Urban Development 

The Honorable Raymond L. LaHood 

Secretary of the US Department of Transportation 

Represented by: 

Camille M. Hazeur 

Director 

Departmental Office of Civil Rights 

US Department of Transportation 

66 
The Honorable Arne Duncan 

Secretary of the US Education Department 

Represented by: 

K. Charlie Lakin

Director

National Institute for Disability and

 Rehabilitation Research 

U.S. Education Department 

The Honorable Janet A. Napolitano 

Secretary of the US Department of Homeland Security 

Represented by: 

Brian S. Parsons 

Senior Policy Advisor 

Office for Civil Rights and Civil Liberties 

US Department of Homeland Security 

The Honorable Wendy Spencer 

Chief Executive Officer of the Corporation for National and Community Services 

Represented by: 

Jewel Bazilio-Bellegarde 

Senior Training Officer for Disability Inclusion 

Office of Leadership Development and Training 

The Corporation for National and Community Service 

The Honorable Michael J. Astrue 

Commissioner of the US Social Security Administration 

Represented by: 

Leola Brooks 

Senior Advisor for Disability Program Outreach 

Office of Retirement and Disability Policy 

US Social Security Administration 

The Honorable Jacqueline A. Berrien 

Chair of the Equal Employment Opportunity Commission 

Represented by: 

Mary Kay Mauren 

Senior Attorney/Advisor 

The Equal Employment Opportunity Commission 

The Honorable Jonathan M. Young 

Chair of the Board of the National Council on Disability 

67 
 

 

 

 

 

Represented by: 

Gary Blumenthal 

Council Member 

The National Council on Disabilities 

Staff: 

Sharon Lewis, Commissioner 

Laverdia Taylor Roach, Senior Advisor 

Madjid “MJ” Karimi, Project Specialist (Policy Analyst) 

Sheila Whittaker, Program Assistant 

Sara Vogler, Administrative Support Assistant 

68 
 

 

 

ACKNOWLEDGEMENTS 

Report Authors: 

Joe Caldwell, Ph.D. 

Director of Long-Term Services and Supports Policy, National Council on Aging 

Adjunct Assistant Research Professor, University of Illinois at Chicago 

Rachel Patterson, MPA 

Policy Analyst, Association of University Centers on Disabilities 

The views and recommendations contained in the report were directed by the 

Presidents Committee for People with Intellectual Disabilities and do not necessarily 

represent those of the authors or their affiliated organizations. 

Additional Acknowledgements: 

The President’s Committee for People with Intellectual Disabilities wishes to thank the 

following individuals for their assistance, contributions, and review of this report: 

Edo Banach, Medicare-Medicaid Coordination Office, CMS 

Max Barrows, Green Mountain Self-Advocates (Vermont) 

Suzie Bosstick, Disabled and Elderly Health Program Group, CMS 

Chuck Bruder, Vermont Department of Disabilities 

Maureen Casey, Parent, Arizona 

Alice Dembner, Community Catalyst 

Maureen Fitzgerald, The Arc of the United States 

Merrill Friedman, Amerigroup 

Kathy Greenlee, Administration for Community Living 

Dohn Hoyle, The Arc of Michigan 

George Jesien, Association of University Centers on Disabilities 

Ari Ne’eman, Autistic Self Advocacy Network and National Council on Disability 

Jami Snyder, Arizona Health Care Cost Containment System 

69 
James Toews, Administration for Community Living 

Lynda Zeller, Michigan Department of Community Health 

70 
President’s Committee for People with 

Intellectual Disabilities 

Administration for Community Living 

Administration on Intellectual and Developmental Disabilities 

200 Independence Avenue, S.W. 

Room 637D 

Washington, DC 20201 

Telephone: (202) 619-0634 

Fax: (202) 260-3053 

Website: http://www.acf.hhs.gov/programs/aidd/programs/pcpid 

71