Managed Long-Term Services and Supports

President’s Committee for People with 

Intellectual Disabilities

2012 Report to the President

Accessible Summary 
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ACCESSIBLE SUMMARY

Long Term 

Services and 

Supports:

Introduction

This is an accessible short summary of the full President’s Committee for People with 

Intellectual Disabilities 2012 Report to the President on Managed Long-Term Services 

and Supports. It uses easier to understand language and explains the main points and 

recommendations. 

Across the country, states are starting to change how they pay for and provide longterm services and supports. This report provides background information on this

change and recommendations to federal agencies on how to best serve people with 

intellectual and developmental disabilities in this change. 

Background

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

Managed Long-Term Services and Supports refers to a change in how states will pay 

for and provide the long-term services and supports that people with disabilities use in 

their daily lives. 

Long-term services and supports are the services and supports that people need for 

daily life. They are sometimes called waiver services. This includes personal care 

attendants, home care assistance, and group homes. Long-term services and supports 

help people with daily tasks, like getting dressed, bathing, cleaning the house, or taking 

medications. Long-term services and supports is often shortened to LTSS.

Managed long-term services and supports means that states are changing how they 

pay for and provide these services. Instead of the state paying each provider for 

services, the state will sign a contract with a managed care organization. A managed 

care organization is a company that provides health care and other services. The 

managed care organization will be responsible for providing each person on Medicaid 

with all of the services that he or she might need. 
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There are two important ideas needed to understand managed care. The first is 

incentives; the other is the fragmentation versus coordination. 

Important Terms

Incentives

When a person or company might benefit from doing something, we say that the person 

or company has an incentive to do it. For example, if I want to hire you, I’ll need to give 

you good reasons why you should work for my company, like higher pay. I need to give 

you an incentive to change jobs and come work for me. 

There are incentives in health care and LTSS as well. When doctors 

or providers are paid for each service they provide, they have 

incentives to provide more service – even if they aren’t the services a 

person needs most. The goal of managed care is to change these 

incentives. Managed care organizations try to use money to focus 

on keeping people healthy, instead of only paying for more services. 

Fragmentation and Coordination

Fragmented means broken-up. Today, a lot of our health care services, including LTSS 

are fragmented. It’s rare for doctors or providers to talk to each other or to help make a 

plan for the health of their patients. It’s even rarer for 

doctors to talk to providers of LTSS. Fragmented

medical services cause people to be confused about 

their medical care, prescriptions, and what they are 

supposed to do to stay healthy. 

Traditional Medicaid Managed Care
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Coordinated means working-together. Under managed care, 

the goal is that services will be coordinated. Doctors, nurses, 

providers, and others will all talk to each other about the 

services they will provide. People called “care coordinators” 

will make sure that patients and those receiving services 

understand the care they are getting and what they need to do 

to stay healthy. 

Why are States Interested in Managed Long-Term Services and Supports?

States are interested in managed LTSS for two primary reasons: 1) to control costs and 

2) to improve services. 

1. Controlling Costs: Health care costs have been rising for a long 

time. The recent trouble in the economy has made it more difficult 

for states to afford health care and long-term services and supports 

through Medicaid. By moving toward managed long-term services 

and supports, states hope they can save money.

2. Improving Services: In traditional Medicaid, services can be 

fragmented (see definitions above), meaning that they are confusing 

and do not work well together. By working with one 

company, states hope that Medicaid can provide more 

coordinated services. Coordination means making sure 

that people on Medicaid understand what services they get 

and how their different services work together. States hope that coordinated

services will help people stay healthier and more independent. 

What are the Potential Benefits and Concerns for People with Intellectual and 

Developmental Disabilities?

States are hopeful about the benefits of managed LTSS, but many 

people have concerns. Managed care is a different tool to deliver 

services. Just like other tools, like a hammer or drill, it can be used to 

improve services. But tools can be dangerous if not used properly. 

What matters is how states use the tool.

 

Benefits: Managed LTSS has the potential to improve services and keep people 

healthier and more independent. By working with care coordinators, 

people with disabilities can gain more access to the kind of medical care 

that helps keep people healthy. The managed model also might save 

money, which could be used to offer more kinds of services or reduce the 

number of people on the waiting list.
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Concerns: The “managed” part of managed LTSS means that one company will 

provide most services. Some advocates are concerned that this could limit the options 

for people on Medicaid, or force some people to change doctors or service providers. 

Others are concerned that managed care organizations have limited 

experience serving people with intellectual and/or developmental 

disabilities. Managed care organizations are usually health care providers 

who might not have experience supporting people for self-determination 

and independence. 

The figure below outlines the potential benefits and concerns:

Benefits Concerns

Service coordination Limited choice of providers

Save money Need for state oversight

Reduce waiting lists Lack of experience serving people with ID/DD

Care focused on staying healthy

Can Self-Advocates Get Involved?

Yes! Self-advocates can and should get involved. Providing LTSS in a 

“managed” way is new, so states and managed care organizations

need to hear from self-advocates. Self-advocates can get involved at 

any stage in the process. The graphic below shows the timeline of 

activities where self-advocates can get involved as states move to 

managed LTSS.

Planning

•States 

make plans 

to move 

toward 

managed 

LTSS

Waivers or 

Plans

•States apply 

to the 

federal 

government 

to move 

forward

Contracts

•States sign 

contracts with 

managed care 

organizations

Review

•States and 

advocates 

review the 

plan and 

the 

network

Outreach

•States and 

advocates 

make sure 

people 

understand 

the change

Monitoring

•States and 

advocates 

watch over 

the new 

program 

for quality

Oversight

•States and 

advocates 

continue to 

watch over 

the 

program 

for quality
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Recommendations

The recommendations will call on several federal agencies to take action. Here is a list 

of the federal agencies in the recommendations and what they do.

Federal Agency Duties

Administration for 

Community Living 

(ACL)

ACL oversees the Administration on Intellectual and 

Developmental Disabilities, Office on Disability, and 

Administration on Aging. It works to increase access to 

community supports and full participation for older people and 

people with disabilities. 

Administration on 

Intellectual and 

Developmental 

Disabilities (AIDD)

AIDD is the federal agency that supports the developmental 

disabilities network. The network includes Developmental 

Disabilities Councils (DD Councils), University Centers for 

Excellence in Developmental Disabilities (UCEDDs), and 

Protection and Advocacy systems (P&As). 

Center for Medicare 

and Medicaid 

Services (CMS)

CMS oversees the Medicare and Medicaid programs. They 

must approve any state plan to move to a “managed” model in 

Medicaid. 

Department of Health 

and Human Services 

(HHS)

HHS is responsible for all of the health and other service 

programs in the federal government, including Medicaid. 

ACL, AIDD, and CMS are all a part of HHS.

Department of 

Education (DOE)

DOE is the federal agency responsible for all education 

programs and policies in the United States.

Social Security 

Administration (SSA)

SSA is the federal agency in charge of Social Security, 

including Social Security Disability Insurance (SSDI) and 

Supplemental Security Income (SSI).
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Disability Stakeholder Engagement

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

educate self-advocates and family members about managed LTSS.

It is very important that self-advocates, families, and other disability advocates be 

involved as states move to managed LTSS. Advocates must understand the process 

and potential benefits and risks in order to be meaningfully involved. ACL should have 

the funds to provide this education, training, and assistance so that self-advocates and 

others can be involved. 

2. The Administration for Community Living (ACL) and the Centers for 

Medicare and Medicaid Services (CMS) should help fund coalitions of selfadvocacy organizations and other groups to get involved in the move 

toward managed LTSS in their states.

Self-advocacy groups should be involved as states move to managed LTSS. 

However, most groups lack the money for such an effort. Two parts of the federal 

government, ACL and CMS, should work together to provide money for self-advocacy 

and other advocacy groups to get involved. 

3. The Centers for Medicare and Medicaid Services (CMS) should work with 

the Administration on Community Living (ACL) to ensure that states 

include disability advocates and others affected by the change. 

CMS must approve each state’s plan to move toward managed LTSS. ACL should 

work with CMS to only approve states that have plans to meaningfully include disability 

advocates and others affected by the change. 

Choice and Self-Determination

4. The Centers for Medicare and Medicaid Services (CMS) should not allow 

states to carve out any institutional services and settings (including 

nursing homes and ICFs/ID) from MLTSS.

Any service that is “carved-out” of managed care means that the managed care 

organization would not be responsible for providing or paying for those services. 

Leaving out settings like nursing homes and intermediate care facilities (ICFs) 

would create an incentive for the managed care organization to encourage 

people to live in those settings, particularly people with more significant needs. 

(The term incentive is explained on page 2). All settings should be included in managed 

LTSS so that all people have access to the benefits of managed care and managed 

care organizations do not have incentives to encourage a setting that is not appropriate

for the individual.
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5. The Centers for Medicare and Medicaid Services (CMS) should promote 

person-centered planning and self-directed supports in managed LTSS.

Person-centered planning and self-directed supports are very important to 

promoting self-determination. These ideas may be new to the managed care 

organizations that may not have experience serving people with intellectual 

and developmental disabilities. CMS and states must ensure that personcentered planning and self-direction is included in managed LTSS. 

6. The Centers for Medicare and Medicaid Services (CMS) should make sure

states to use any savings from the change to managed LTSS to improve 

services or serve those on the waiting list.

One of the potential benefits of moving toward managed LTSS is the possibility of 

saving money. CMS and states should make sure that these savings are used to 

improve services or serve people on the waiting list. 

7. The Centers for Medicare and Medicaid Services (CMS) and states should 

provide “navigators” to help people with disabilities understand their 

options, rights, and responsibilities under the new managed LTSS 

system.

“Navigators” help people find their way. The new system of managed LTSS 

can be very confusing. CMS and states should provide each person on 

Medicaid with a “navigator” to help people understand their options, rights, and 

responsibilities under the new system. 

8. The Department of Education, Department of Health and Human Services, 

and Social Security Administration should work together to ensure that 

students and families know their options for LTSS when they transition 

from high school. 

Transitioning from high school into post-secondary school or work is a 

challenging time for all students and can be more challenging for students with 

disabilities. Often, families lack information on their options for LTSS at a time 

when students might be transitioning from their family home. With the move to

managed care, states and schools will need to work even harder to help 

students and families understand their options, rights, and responsibilities. 

Consumer Protection and Rights

9. The Centers for Medicare and Medicaid Services (CMS) should ensure that

states are ready to implement and oversee MLTSS programs and are 

contracting with health plans that can adequately serve individuals with 

intellectual and developmental disabilities.
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States have to be ready to implement and oversee MLTSS programs. Managed care 

organizations often operate a network of providers. Mostly, people on Medicaid under 

managed LTSS will only be able to receive services from providers in that network. 

Before moving forward with managed LTSS, CMS and states must ensure that the 

network is ready to meet the needs of people with intellectual and developmental 

disabilities. 

10.The Centers for Medicare and Medicaid Services (CMS) should require 

states to have systems or organizations dedicated to helping people on 

Medicaid with complaints and appeals, to advocate on their behalf, and to 

monitor the system as a whole.

Managed LTSS can be confusing, particularly if something goes wrong. States 

should hire independent advocates, often called “Ombudsmen,” to assist and 

advocate for people on Medicaid if they have complaints or need to appeal a 

decision. These “ombuds” programs should also keep watch over the system 

as a whole to ensure that the rights of people on Medicaid are protected. 

11.The Administration for Community Living (ACL) should work with states to 

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

– as well as avoid inappropriate guardianship – in states moving toward 

managed LTSS.

Managed care organizations often have little experience working with people with 

intellectual and developmental disabilities. States should ensure that managed care 

organizations and care coordinators are encouraging supported decision-making, selfdetermination, and self-advocacy so that managed care organizations do not encourage 

guardianship where it is not appropriate. 

Quality Measurement, Data Collection, and Research

12.The Centers for Medicare and Medicaid Services (CMS) and Administration 

for Community Living (ACL) should work together to create consistent 

measures of quality specific to people with intellectual and developmental 

disabilities.

Managed care organizations often have little experience working with people 

with intellectual and developmental disabilities. Because of this lack of 

experience, states should pay special attention and create measures of 

quality specifically for people with intellectual and developmental disabilities. 
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13.The Centers for Medicare and Medicaid Services (CMS) should only allow 

managed LTSS to move forward if states will report on the quality of the 

direct support professional workforce.

High quality direct support professionals are very important to high quality LTSS. 

Managed care organizations and states should be required to report data on the 

wages, hours, turnover, and availability of workers. This reporting should encourage 

managed care organizations to improve the workforce. 

14.The Centers for Medicare and Medicaid Services (CMS) and Administration 

for Community Living (ACL) should work together to create measures of 

quality for home and community-based services.

The system of long-term services and supports across the country lacks 

measures of quality. Federal agencies and states should work together to 

create these measures. States and managed care organizations should be 

required to report on them. 

15. The Administration for Community Living (ACL) should bring together 

federal agencies, states, researchers, and health plans to promote research 

on managed long-term services and supports. 

Overall, there is not enough knowledge about managed long-term services and 

supports, particularly for people with intellectual and developmental disabilities. Federal 

agencies, states, researchers, and health plans should work together to 

do research on managed long-term services and supports and how it 

affects people.