Medicaid and Community Supports

Olmstead and Community
A Three Course Self Study Series on Community Integration for Persons with Disabilities

Authors:
Catherine E. Chambless, Ph.D.
Judith Holt, Ph.D.
Richard Petty, MBA
A publication of the IL Net National Training and Technical Assistance Program at Independent Living Research Utilization at TIRR
Developed in Collaboration with Utah State University Center for Persons with Disabilities

Copyright© June 2005 by ILRU
This is a publication of the IL NET.

The IL NET is a collaborative project of Independent Living Research Utilization (ILRU) and the National Council on Independent Living (NCIL), with funding from the Rehabilitation Services Administration. The IL NET provides training, technical assistance and publications supporting the work of centers for independent living and statewide independent living councils.

ILRU is a program of The Institute for Rehabilitation and Research (TIRR), a nationally recognized, freestanding rehabilitation facility for persons with physical disabilities. TIRR is a part of TIRR Systems, which is a not-for-profit corporation dedicated to providing a continuum of services to individuals with disabilities.

ILRU Program
2323 S. Shepherd, Suite 1000
Houston, TX 77019
713.520.0232 (Voice and TDD)
713.520.5785 (Fax)
http://www.ilru.org.

Lex Frieden
ILRU Director

Richard Petty
ILRU Program Director
IL NET Director

Publications Staff: Laurel Richards, Darrell Jones, Dawn Heinsohn, Sharon Finney, Marisa Demaya and Rose Shepard.

Permission is granted for duplication of any portion of this manual, providing that the authors, ILRU and the IL NET are credited:
Chambless, C. E., Holt, J., Petty, R. E., (Authors). (2005). Medicaid and Community Supports (Course Three). Olmstead and Community: A Three Course Self Study Series on Community Integration for Persons with Disabilities). Houston, Texas: ILRU and the IL NET.

Substantial support for development of this publication was provided by the Rehabilitation Services Administration, U.S. Department of Education. No official endorsement of the Department of Education should be inferred.

Table of Contents

Transcripts of audio files needed for the sessions.

Preface |
Acknowledgements |
Course Description, Context, Objectives, and Listing of Audio Modules |
Important Contact Information |
SESSION ONE: Introduction, Orientation and Expectations, and Introductions |
SESSION TWO: Medicaid – A Safety Net |
SESSION THREE: The State Plan & Medicaid Services |
SESSION FOUR: Medicaid Services in Your State |
SESSION FIVE: Who Can Get Medicaid? — Eligibility |
SESSION SIX: More Medicaid Eligibility |
SESSION SEVEN: Exceptions to the State Plan -- Medicaid Waivers |
SESSION EIGHT: More Medicaid Waivers |
SESSION NINE: Managed Care |
SESSION TEN: Medicaid Appeal Rights |
SESSION ELEVEN: Medicaid and Community Supports |
SESSION TWELVE: Personal Assistance Services |
SESSION THIRTEEN: New Freedom Initiative |
SESSION FOURTEEN: Tying It Together - Review of Course Three |
SESSION FIFTEEN: Applying Your Advocacy Skills |

PREFACE

Welcome to the final course of the three-part training on Olmstead and Community. For those of you who have completed the first two courses, congratulations! You are well on your way to becoming superb advocates for individuals with disabilities.

In this course, you will learn about the Medicaid program. You will learn about the history of Medicaid and how it came to be established. We will examine the services that are specified in the federal Medicaid law, and you will research state plan services offered in your state. It is necessary for you to know how people can qualify for Medicaid in your state, so we will look at eligibility rules. The important and quirky subject of Medicaid Waivers will be defined and explained. You will be asked to research specific home and community-based services in your state. We will discuss the new reform measures in Medicaid called the New Freedom Initiative. Finally, you will be asked to apply what you have learned about Medicaid to your advocacy.

This all sounds like a large undertaking for a three-week course. But remember, you have made it this far and all the pieces will fit together if you persevere. We have tried to break up the content into manageable pieces.

The authors want this course to be relevant to you. In order for that to happen, you will need to research, explore, ask questions, probe and be curious about the Medicaid program in your state. The structure of the course will help you do that. Read the manual, keep up with the discussions and even the formidable topic of Medicaid will be quite interesting.

You may already have a lot of experience with and information about the Medicaid program. This course will give you a framework upon which you can build the information and experience you already have. We hope after completing this course, your present knowledge will make sense and provide a clearer understanding of what Medicaid can do and how you can be a better advocate.

ACKNOWLEDGEMENTS

Support for this Olmstead Training Project was provided by the U.S. Departments of Education, Health and Human Services, and Labor. Several officials in these departments demonstrated great commitment to this important project: Thomas Hamilton, Bob Williams, Henry Claypool, Judy Heumann, Curtis Richards, Tom Finch, and James Billy. Initial planning was supported through funding provided to ILRU by the Robert Wood Johnson Foundation.

Initial development work for the project was done at ILRU and the BIA, Inc., by Lex Frieden, Allan Bergman, Laurie Redd, and Laurel Richards. Bob Kafka of ADAPT played a pivotal role in project design. Richard Petty of ILRU has headed curriculum development and coordinated three of the training conferences on which the video course is based. He also headed development of the video-based training modules. Allan Bergman of the BIA, Inc. coordinated two training sessions and provided valuable leadership for the project. Sharon Finney of ILRU managed materials development and training logistics.

The curriculum for this video-based course was developed under the direction of ILRU, at the Utah State University Center for Persons with Disabilities. Dr. Judith Holt led the development team. She was assisted by Carri George, B.A. and Catherine E. Chambless, Ph.D. Many others have participated in the development of the overall training approach and curriculum, including: Mike Auberger, Sandra Barrett, Jan Bergman, Lee Bezanson, Carol Bianco, Suzanne Crisp, Danita Davis, Amy Fitzgerald, Nikki Highsmith, Rosalie Kane, Debbie Kaplan, Darlene (Dee) O’Connor, Mike Oxford, Helen Roth, Ralph Rouse, Claudia Schlosberg, Bobby Silverstein, Steve Somers, Phil Stinebuck, Janna Starr, Cathy Ficker Terrill, Nainan Thomas, and Phyllis B. Wolfe. Many others have assisted in all stages of development and implementation.

Sue Fager, Deborah Leuchovius, and others of the PACER Center invested significant time and effort in the development process and pilot training, especially the transition module, and helped make the entire set of manuals more useful and user friendly for youth and families. Sue Fager has continued to work with curriculum developers throughout the final revision process which has resulted in this versiion of the material.

The leaders and staffs of ILRU, BIA, Inc., and the Center for Persons with Disabilities at Utah State University wish to express our deepest appreciation to all who have made this training possible. We sincerely believe the work of advocates in states across the nation will create lasting change to improve the lives of people with disabilities of all ages. The other sponsors and supporters of this training are committed to supporting advocates and officials in their important role.

Course Three: Medicaid and Community Supports

Olmstead and Community
Community Integration for Persons with Disabilities

Course Description, Context, Objectives and Listing of Audio Modules

After successful completion of this course, learners will understand the basic structure of a state Medicaid program including mandatory and optional services and who can qualify, how Medicaid is used to support individuals with disabilities to live in their homes and communities, and the initiatives in Medicaid that can be used to promote consumer self-direction and community living.

Context

This is a three course series designed to help executives, staff, and boards of centers for independent living improve their systems and individual advocacy within the context of the Olmstead decision. The series begins in the first course by covering Bobby Silverstein's disability policy framework and then showing how to use that framework to assess laws and policies that affect people with disabilities. Course Two addresses consumer direction and provides a fresh look at implementation of this central independent living precept-an approach we try to implement in our centers and that we must advocate in all services and supports. The subject of Course Three is Medicaid, the primary funding mechanism for most home and community-based services. The course will cover eligibility, state plan services, and waivers. Just as important, course three will provide a context for understanding ever changing federal and state Medicaid policy. At the conclusion of the three courses, participants will have new knowledge to advocate more effectively.

Course Three Objectives:

• A brief history of Medicaid
• Services that are offered by the Medicaid State Plan in your state
• How people can qualify for Medicaid in your state
• The concept of waivers
• Specific home and community-based services in your state
• New reform measures in Medicaid called the New Freedom Initiative
• How to apply what you have learned about Medicaid to your advocacy

List of audio files and corresponding sessions:

Session 2: History of Medicaid - (Lee Bezanson)
Sessions 3 & 4: Medicaid State Plan - (Lee Bezanson)
Sessions 5 & 6: Medicaid Eligibility - (Lee Bezanson)
Sessions 7 & 8: Medicaid Waivers – (Alan Bergman and Lee Bezanson)
Sessions 11 & 12: Medicaid and Community Supports - (Lee Bezanson)

IMPORTANT CONTACT INFORMATION

For Answers to Questions on Course Content:

Richard Petty
ILRU
2323 S. Shepherd, Suite 1000
Houston, TX 77019
713.520.0232 ext. 122
713.520.5785 Fax
Richard.Petty@bcm.tmc.edu

To Order Additional Copies of this Course:

Dawn Heinsohn
ILRU
2323 S. Shepherd, Suite 1000
Houston, TX 77019
713.520.0232 ext. 130
713.520.5785 Fax
Heinsohn@ilru.org

SESSION ONE: Introduction, Orientation and Expectations

Introduction

In this course you will learn the fundamentals of the Medicaid program, the federal/state program that is an important source of funding for basic health care services and long-term supports needed by people with disabilities to live in the community. In order to really understand what Medicaid can do in your state, you will need to learn about your state’s unique Medicaid program rules. Within each session, you will read information from the Course Manual. Some sessions have audiotapes of experts discussing the topic.

This course has audio files of two people very knowledgeable about Medicaid: Lee Bezanson and Allan Bergman. Lee will tell you about the history of Medicaid and the basic structure of the program. Allan will discuss Medicaid Waivers. Waivers are additional services that Medicaid provides to people who need services like that provided in nursing homes. Lee will also discuss other ways Medicaid is used to support community services.

Biographies

Lee Bezanson is an Associate Research Professor at Boston College and a Management Partner with The Community Living Exchange at ILRU.

Allan Bergman is the President and Chief Executive Officer of the Anixter Center of Chicago, a leading provider of high-quality vocational, residential and educational services. He previously served as the President/CEO of the Brain Injury Association of America. He is a leading public policy analyst and advocate on behalf of people with disabilities.

This course manual uses reading material from a new resource guide published through the Kaiser Family Foundation titled: Navigating Medicare and Medicaid, 2005: A Resource Guide for People with Disabilities, Their Families, and Their Advocates. The entire publication is available on the Internet, but relevant sections are excerpted in this manual for you to read. The selections fit together well with the audio pieces and the exercises. This document was prepared by Bob Williams and Henry Claypool with Jeffrey Crowley.

Biographies

Bob Williams is co-director of AIMMM, Advancing Independence: Modernizing Medicare and Medicaid, a project of HalfthePlanet Foundation. He was appointed by President Bill Clinton and HHS Secretary Donna Shalala to be the first American with significant disabilities to be the Commissioner of the Administration on Developmental Disabilities in Health and Human Services (HHS). Four years later, Shalala again tapped Bob to be her Deputy Assistant Secretary for Disability, Aging and Long Term Care Policy in the Office for Planning and Evaluation. Born with significant cerebral palsy in 1957, He has lived and worked in Washington, DC for nearly 25 years.

Henry Claypool is the other co-director of AIMMM. He is the former Senior Advisor for Disability Policy to the Administrator of the Health Care Financing Administration (HCFA), now the Centers for Medicare and Medicaid Services in HHS. After becoming disabled when he was a student at the University of Colorado, Claypool went on to become the director of the disability services office at its Boulder campus. He also managed a home health agency for people with significant disabilities housed within an independent living center.

You can obtain specific information about your own state’s Medicaid plan by searching the Internet. We will give advice and clues during the course to help you navigate the web to find information you seek. You may also want to talk with someone who is knowledgeable about Medicaid in your state. The course has been designed for leaders and staff of centers for independent living and statewide independent living councils. Others involved in disability advocacy and home and community-based services will also find the course useful.

This is a self-study course. You will work at your own pace. The authors recommend that you schedule a block of time, say three to four weeks, during which you will read this manual and complete the exercises. Plan to spend an hour or so on each session. Some sessions will take less time, others a little longer. Create a notebook for your answers and even after the course keep it with this manual for future reference.

If you get stuck, do not hesitate to contact ILRU. We will help answer your questions and put you in contact with others addressing Olmstead issues. And, if you find self study challenging, ask about the online and traditional conference training that we offer. For some, the reinforcement of a class setting makes learning much more pleasurable. See the cover pages of this course for ILRU contact information. After you read the manual, listen to the audio for each session, and research your Medicaid plan on the Internet, then you will have some exercises to complete.

Session 1 Activities

• Read the preface and this first section.
• Review the entire course manual; note the upcoming sections.
• Locate the audio segments on CD.
• Create a course notebook for yourself where you can record your answers to exercises.
• In your course notebook, write a brief statement about what you hope to gain from the course. Is there anything in particular you want to learn about Medicaid in this course?

SESSION TWO: Medicaid – A Safety Net

Medicaid is often referred to as America’s safety net for its poor. For millions of children, adults, and older Americans with disabilities, it’s that and far more. For someone with a disability, being able to obtain Medicaid services and community living supports can mean:

• Receiving the personal assistance you need to get out of bed, to eat, to get dressed, and go about your day
• Getting the epilepsy medication your need to control your seizures
• Being able to see a mental health counselor to help your depression
• Keeping your Medicaid even when you are competitively employed
• Waking up in your own home instead of in a nursing home

Medicaid is a nationwide program funded jointly by the federal government and the states. Medicaid pays for health care, institutional long-term care, and community living services for about 50 million low-income children and their families, people with disabilities, and older persons. No other public or private insurance plan covers such a comprehensive range of health care, institutional long-term care, and community living services. Medicaid is best known for the essential health care coverage it provides to poor children, but it also can play a unique and compelling role in improving the health and independence of an estimated 8.4 million low-income people with disabilities throughout the nation.

Because every state plays a significant role in financing Medicaid services, each one has broad discretion in designing and administering its Medicaid program. Within broad national guidelines set by the federal government each state:

1. Establishes its own eligibility standards
2. Determines the type, amount, duration, and scope of services it will provide
3. Sets the rate of payment for services
4. Administers its own program

Thus, the Medicaid program varies considerably between and within states. This guide provides information about federal Medicaid requirements and describes some of the ways that states can go beyond federal standards to meet the diverse needs of people with disabilities of all agesi.

The History

As Lee Bezanson will explain in the first audio file, Medicaid has a very interesting history. Medicaid was established as federal law in 1965 and Medicare was enacted in the same year. Lee says, “No one designed Medicaid and it doesn’t make any sense.” The reason she says that is because Medicaid has evolved to meet the changing times and the needs of the people.

Biography: Lee Bezanson

Lee Bezanson is an Associate Research Professor at Boston College and a Management Partner with The Community Living Exchange at ILRU. Previous to these positions, she was the Medicaid Director for the State of New Hampshire. She is a psychiatric nurse and an attorney by training.

Play the audio clip for Session 2: The History of Medicaid (Lee Bezanson).

Some interesting points that have helped Medicaid become what it is today are as follows:

• Since 1965 the private insurance market has systematically eliminated coverage for people who are “high cost” and “high risk.”
• Each time that happened those people have turned to Medicaid.
• New groups, new services, or new waivers were added.
• The Medicaid program has become the health care safety net for people who are unable to obtain insurance anywhere else. This includes primary and long-term health care.
• Each new group had its own eligibility rules and coverage rules. (That’s why it doesn’t make any sense.)

Medicaid is an important source of funding for basic health care services and long-term supports needed by people to live in the community. Some important things to remember about Medicaid are:

• It is a federal-state partnership.
• It is administered by each state under broad federal requirements and guidelines.
• Each state develops its own State Plan.
• The Federal government “matches” State money.
• Match rates vary from state to state.
• It is a medical program; it provides medical services and also provides psychosocial supports for certain groups.
• It currently serves over 50 million people (Lee says 37.5 million on the audio, but this was a couple years ago), including senior citizens, low-income people with disabilities, and adults who are referred to as the working poor (in some states).

Note: There is a “quirk” in Medicaid: Medicaid does not cover inpatient psychiatric services for people between 18-64 years of age. Because waivers are intended to offer alternatives to institutional services, there are no Home and Community-Based Waivers for adults with mental illness. This is called IMD (Institution for Mental Disease) Exclusion.

Session 2 Questions

1. Who develops the Medicaid state plan?
2. Why is it important to understand the relationship between state and federal control?
3. Is there consumer input into the process?
4. What are the “hot button” issues in Medicaid in your state today?

SESSION THREE: The State Plan & Medicaid Services

Play the audio clip for Sessions 3 & 4: Medicaid State Plan.

The State Plan

A State Plan is the written document submitted by your state Medicaid agency. The Centers for Medicare and Medicaid Services (CMS) must approve it.

The State Plan describes who can get Medicaid (eligibility) and what services are offered (coverage). In the next two sessions we will be discussing the services that are offered by Medicaid.

There are two types of Medicaid services: basic services and optional services.

Basic Medicaid Services

Basic services are mandatory and must be offered to children and adults who meet the eligibility requirements if a state has a Medicaid program. Some examples of basic (mandatory) services are:

• Inpatient and outpatient hospital care
• Laboratory and X-ray services
• Physician services
• Immunizations and early periodic screening diagnosis and treatment (EPSDT) for children
• Home Health Services
• Nursing home entitlement

Optional Medicaid Services

Services other than the basics may or may not be provided. These are called “optional” services.

There is large variation among states in what is provided (type of services), how much is provided (amount of services), and who is eligible for specific services.

States may choose to provide a number of optional services. Remember that each state exercises a great deal of control over who is eligible for specific services. Optional services may include:

• Outpatient rehabilitation services
• Occupational, physical, and respiratory therapy
• Speech-language-hearing services
• School-based program for children with special health needs
• Clinical services, which can include mental health services
• Assistive technology
• Targeted case management for individuals with developmental disabilities or mental health needs
• Personal care services
• Home medical equipment, orthotics, and prosthetics
• Dental services
• Prescription drugs
• Other health professional services often targeted to individuals with mental illness or other disabilities
• Services in institutional and community living situations though the ICF/MR (Intermediate Care Facility for People with Mental Retardation) program
• Inpatient mental health services for children under age 21
• Home and community-based long-term supports/services
• Day treatment and habilitation

Now that you have a basic understanding of Medicaid’s history, the state plan, and some of its basic and optional services, read Lee Bezanson’s biography and then watch the video to help solidify the principles.

Session 3 Questions

1. Are the basic services in your state the same as on the list? Are there additional services for youth (under 18)?
2. Look at both lists of basic and optional services. Are there services that you didn’t know were paid for by Medicaid? What services are NOT offered?
3. How do these services compare to other health insurance plans that you are familiar with?

SESSION FOUR: Medicaid Services in Your State

In Session Three you read the list of Basic Services that the federal government requires a state to provide through its Medicaid program. You also saw a different list of Optional Services that states may offer through Medicaid and receive financial help from the federal government. In Session Four you can explore what optional services are offered in your own state.

You will need to do some research to find out what optional services are offered in your state. You can search the Internet for your state’s Medicaid State Plan to find a list. Visit the Centers for Medicare and Medicaid Services (CMS) website:
http://www.cms.hhs.gov/medicaid/allstatecontacts.asp

If it is difficult for you to find on your state’s website, contact a local Medicaid office and ask for a brochure that describes your state’s Medicaid program. Ask if there is a brochure specific for people with disabilities.

Medicaid “Match”

Medicaid “match rates” vary among states, depending on the economic conditions of the state. The match rate determines how much state funding is needed to provide a service through Medicaid. The higher the match rate, the more advantageous it is for a state to obtain Medicaid. For instance, in some states for every $1 the state puts into Medicaid, they get $3 from the federal government.

Session 4 Questions

1. Search your state’s Medicaid website or obtain a brochure listing services. What optional services are offered to adults in your state?
2. What limitations are imposed by the state (in terms of who can get services and how much they can get)? How are the limitations different for children services and for adult services?
3. What is the current state match rate? What does this mean for the State Legislature in your state?

SESSION FIVE: Who Can Get Medicaid? — Eligibility

Who is eligible for Medicaid?

Medicaid provides health care coverage to 52.4 million people, making it the largest health care program in the country. Medicaid covers roughly 8.4 million people with severe disabilities. In general, Medicaid provides coverage for three basic groups of Americans: children and their parents, the elderly, and people with disabilities. Individuals must have low incomes, have few assets (such as money in the bank), and meet immigration and residency requirements.

Which groups of people are states required to cover under Medicaid?

State Medicaid programs must provide Medicaid to some people, called mandatory populations. These include pregnant women and children under age 6 with family incomes less than 133 percent of the poverty level ($1,737 per month in 2004 for a family of 3) and older children (age 6 to 18) with family incomes less than 100 percent of poverty ($1,306 per month in 2004 for a family of 3). States must also cover some low-income parents, as well as people with disabilities and the elderly who are eligible for the Supplemental Security Income (SSI) program or similar state-set requirements. For people with disabilities to qualify for SSI, their income must be below $579 per month in 2005 for a single individual (roughly 74% of the poverty level). In addition, states are required to assist certain low-income Medicare beneficiaries by paying their Medicare Part B premiums ($78.20/month in 2005) and, in some cases, cost-sharing.

Which groups of people can states choose to cover (or not cover) under Medicaid?

States also have the option to cover other people, called optional populations. These include certain other groups of low-income children and their parents, people with disabilities, and the elderly with low to moderate incomes above mandatory coverage limits. For example, many states have expanded eligibility to people with disabilities up to the poverty level. An important optional coverage group for many people with disabilities is the medically needy. Additionally, over the past decade, Congress has passed two major laws to give states the option to extend Medicaid eligibility to working people with disabilities.

To learn more about eligibility policies for people with disabilities in your state, see the website of the National Association of State Medicaid Directors at: http://www.nasmd.org/eligibility/.

How do I find out if I am eligible for Medicaid?

Since Medicaid rules can vary dramatically from one state to another, the best way to find out the specific eligibility requirements is to contact the Medicaid office in your state. Telephone, fax, and Internet contact information can be found at:
http://www.cms.hhs.gov/medicaid/allStateContacts.asp.

What does it mean to be “medically needy”?

Thirty-five states plus the District of Columbia operate programs for the “medically needy”. The medically needy option allows states to provide Medicaid to certain groups of individuals who are ineligible because of “excess income,” but who have high medical expenses. States often use the medically needy program to expand coverage primarily to persons who spend down by incurring medical expenses so that their income minus medical expenses falls below a state-established medically needy income limit (MNIL). The opportunity to spend down is particularly important to elderly individuals living in nursing homes and children and adults with disabilities who live in the community and incur high prescription drug, medical equipment, or other health care expenses, either following a catastrophic incident or due to a chronic condition.ii

Play the audio clip for Session 5 & 6: Medicaid Eligibility with Lee Bezanson.

How do you get Medicaid benefits? In order to qualify for services, you need to get a Medicaid card. If you get the card, you are entitled to all of the state plan basic services. There are also waivers to qualify for, which will be discussed in Sessions 7 and 8.

Lee Bezanson explains that eligibility for Medicaid is about access through the right door. There are many doors and they are different for children and for adults. You have to find a door to qualify before you can get Medicaid services.

Services for Children

• Medicaid is different for children than it is for adults.
• Medicaid is the largest insurance package in the country for children.
• The law requires states to provide for children a rich package of benefits, known as EPSDT (Early Periodic Screening, Diagnosis, and Treatment).
• States are mandated to screen children periodically.
• Almost everything is covered.
• States must provide any service if it is determined to be medically necessary for that child.
• The services for children are not utilized as effectively as they could be, but they open the door to do the right thing for children.

Doors (Categories) for Children Who Qualify

• Children with disabilities on SSI
• Children in low-income households
• Children in households above the poverty level under special rules (Title 21 programs – Child Health Insurance Program (CHIP)). The state will normally look at a family’s income to determine eligibility (an exception is the Katie Beckett Option)

The Katie Beckett Option is a Waiver option (not available in all states) that allows for Medicaid funding for care at home for children who need institutional level of care. The parents’ income is not counted for purposes of Medicaid eligibility under this option.

Session 5 Questions

1. Where can a person apply for Medicaid in your state?
2. What “doors” open to Medicaid in your state? How are they different for youth and adults? Do you know what “door” you (or someone you know) qualify/ies under? (Refer to lists previously mentioned for children and adults.)
3. What is the maximum income limit for a person or family to receive Medicaid? Does this change every year?
4. In determining eligibility, a person’s assets or resources are also considered. What is the asset/resource limit in your state? What is considered an asset?

SESSION SIX: More Medicaid Eligibility

Services for Adults

The services for adults are not as robust as they are for children, and adults have a smaller service package. For example:

• There is no requirement like EPSDT has.
• The dental services are better for children than for adults.

Medicaid, however, is the “only act in town” for long-term services for adults.

Examples of Doors (Categories) for Adults Who Qualify

• Persons with disabilities on SSI
• Adults with low-income who have dependent children
• Adults with low-income who are 65 or over

An important thing to remember with Medicaid is that if you have private insurance and Medicaid, you must always exhaust your private insurance before Medicaid will pick up the rest of the bill. Wraparound and community-based services for people with disabilities follow this principle.

Wraparound and Community-Based Services

Wraparound services include an array of services and supports that are needed by an individual, not just a single service. These are typically not medical services but are social supports such as transportation, personal assistance, counseling, or service brokering. Medicaid will pick up wraparound and community-based services because Medicaid is the “only game in town.”

Remember, if you have private insurance and Medicaid, you must always try to exhaust your private insurance first. Medicaid is always the payer of last resort. Ironically, when it comes to “wraparound services,” Medicaid is usually the only source of funding.

Term Definition: Wraparound Services

A multiple array of services and supports needed by an individual to live in the community. Typically these are not ‘medical’ services.

What does it mean that Medicaid is an entitlement?

For individuals, Medicaid’s entitlement means that all people who meet Medicaid eligibility requirements have an enforceable right to enroll in Medicaid and receive Medicaid services on a timely basis. This means that a state cannot deny Medicaid coverage to individuals if more people enroll than a state expects, nor can states have waiting lists. The exception to this applies to those receiving Medicaid services under any type of Medicaid waiver. This is discussed further below.

Further, the individual entitlement means that people enrolled in Medicaid have a right to receive all Medicaid covered services when they are medically necessary, as determined by the state. To meet this standard, a physician or qualified health professional must determine that a service is needed and the individual may also need to meet certain clinical or functional criteria. When individuals are denied Medicaid eligibility or services to which they are entitled, they can go to federal court to force states to comply with Medicaid’s rules. Although rarely used, individual enforcement of Medicaid, called a private right of action, has been important in protecting people with disabilities and others in Medicaid.

Medicaid is also an entitlement to the states. This means that if states follow Medicaid rules, they have a legal right to have the federal government pay its share of Medicaid expenses. The federal share of a state’s Medicaid spending is called the federal medical assistance percentage (FMAP). The FMAP formula is based on average per capita income. States with per capita incomes above the national average receive lower matching percentages. By law, the minimum FMAP is set at 50 percent, and the maximum is set at 83 percent. To learn what your state receives in federal Medicaid spending, go to the Medicaid Spending section in the Medicaid topic at: http://www.statehealthfacts.org.iii

Session 6 Questions

1. How can a person find out if his/her disability qualifies for Medicaid?
2. Does your state offer Medicaid to people with disabilities above the maximum SSI benefit level up to the poverty level?
3. Does your state offer Medicaid to people with disabilities who are above the poverty level (called the Medically Needy program)? In this program an eligible person can pay a monthly “spenddown” to receive a Medicaid card.
4. Does a person on SSI become automatically enrolled in (signed up for) Medicaid, or is there a separate application process? Why is this important to know?

SESSION SEVEN: Exceptions to the State Plan — Medicaid Waivers

What are Medicaid waivers?

Waivers are programs that allow the Secretary of Health and Human Services to permit individual states to receive federal matching funds without complying with certain Medicaid rules (such as the consumer protections described above). Unlike regular Medicaid services, waiver services can be provided to specific targeted populations or to persons in limited parts of a state.

What are home and community-based services (HCBS) waivers? How do these programs differ from regular Medicaid programs?

The 1915(c) waiver, also called the home and community-based services (HCBS) waiver, is the most frequently used waiver for providing services in the community. These waivers are available to Medicaid-eligible individuals who, without the waiver services, would be institutionalized in a hospital or nursing facility. This type of waiver allows the Secretary to waive certain financial eligibility requirements and the Medicaid requirement that services must be “comparable” among beneficiaries and must be provided statewide. The Secretary also has the authority (which is regularly invoked) to impose enrollment caps to ensure the budget neutrality of HCBS waivers. This is done to prevent waivers from increasing federal Medicaid costs.

What are 1115 demonstration waivers? How do these programs differ from regular Medicaid programs?

The 1115 demonstration waiver gives the Secretary the broadest authority to waive compliance with Medicaid rules. While Congress has proscribed the waiving of certain parts of the Medicaid law, the 1115 demonstration authority gives the Secretary broad discretion to approve waiver programs that are “likely to assist in promoting the objectives” of the Medicaid law. States have used 1115 demonstrations to make changes to Medicaid that affect the entire program. This type of waiver can also be used to waive Medicaid rules that cannot be waived under the 1915(c) waiver program. Recently, some states have sought to make wholesale changes to Medicaid through this type of waiver, in some cases asking essentially to eliminate the entitlement to Medicaid services. People with disabilities and their advocates have frequently opposed these types of waivers, which have resulted in capped funding for Medicaid services.

Why can’t all people in Medicaid receive services in the community?

One of the shortcomings of Medicaid is that it has an institutional bias; meaning Medicaid funds are more likely to pay for institutional services rather than those that are provided in someone’s home and community. This is because nursing home coverage is mandatory, but coverage of the same types of services that are available in the community is optional.

While waivers have enabled states to experiment with different ways of providing community-based services, using them invariably results in significant inequities both across and within states in what people with disabilities receive. This, in turn, has led to long waiting lists to receive services in the community. iv

Listen to the audio for Sessions 7 & 8: Medicaid Waivers (Alan Bergman and Lee Bezanson).

Biography Allan Bergman

Allan Bergman is the President and Chief Executive Officer of the Anixter Center of Chicago, a leading provider of high-quality vocational, residential and educational services. He previously served as the President/CEO of the Brain Injury Association of America. He is a leading public policy analyst and advocate on behalf of people with disabilities.

Waivers: Exceptions to the Rules

In addition to the state plan, states have waivers. Waiver services are provided in addition to the state plan services that cover basic and optional services discussed earlier.

Waivers provide exceptions to existing Medicaid rules and regulations that states typically have to follow. There are three kinds of waivers: Freedom of Choice Waivers, Research and Demonstration Waivers, and Home and Community-Based Services Waivers. Each is briefly explained below.

• 1915(b) Freedom of Choice Waivers: States can limit a person’s choice of provider. These waivers are in states that have mandatory managed care.
• 1115 Research and Demonstration Waivers: States can try out innovative approaches that are “cost neutral.”
• 1915 (c) Home and Community-Based Services Waivers: States ask to “waive” rules around institutional placement so they can provide alternatives in the community.

Requirements That Can Be Waived

States can waive several requirements in a Home and Community-Based Waiver such as “Statewideness,” Comparability, Cost Ceiling, and Entitlement.

Statewideness

Waivers can be granted to allow programs to serve people in some areas of a state and not all areas.

For example, Allan mentions that a state can do a home and community-based waiver only in Hartford, Connecticut, which would be perfectly legal. You can live in one area and be eligible for it, and live in another area and not be eligible.

Comparibility

Waivers can target specific diagnostic groups, and states can provide extra services to people in that group. For example:

• States can have an AIDS-HIV Waiver and a Children with Special Health Care Needs Waiver.
• Some states have as many as 12-14 waivers for different parts of the population, in different parts of the state.

Note: It is important to note there are no legal protections for people who could benefit from waiver services but who have a different diagnosis from the one defined in a waiver. Remember, in regular Medicaid if you offer a service it has to be available to all comparable groups.

Cost Ceiling

Waivers can set an upper limit on how much can be spent for a service. Regular Medicaid does not permit cost ceilings.

Entitlement

Waivers can set a limit on how many individuals receive services. Waivers can have “Wait Lists” or waiting lists. Regular Medicaid does not permit waiting lists.

Find out more

An excellent reference for a comprehensive explanation of Medicaid waivers is: Understanding Medicaid Home and Community Services: A Primer, by Gary Smith, Janet O’Keeffe, Letty Carpenter, Pamela Doty, Gavin Kennedy, Brian Burwell, Robert Mollica, and Loretta Williams, George Washington University, Center for Health Policy Research, October 2000.

To find it on the web go to: http://aspe.hhs.gov/daltcp/reports/primer.htm.

Session 7 Questions

1. How many waivers are there for adults in your state? For children (under 18)? Ask for a list of Home and Community-Based Services (1915c) Waivers in your state.
2. Who are the targeted groups for these Home and Community-Based Services Waivers? Can you find a list of the specific requirements to qualify?

SESSION EIGHT: More Medicaid Waivers

Important Waiver Features

In the audio for Sessions 7 & 8, Lee Bezanson explains several important things for you to remember about state waivers as you advocate for services. Each of these issues is reviewed below.

State Control

There’s a ceiling on how much states can spend in waivers. Hence, they like to do waivers because they feel they have some control over the money spent.

For example, if a state applies for a waiver, it would have to prove that the aggregate cost (combined cost for all of those who are on the waiver) of the waiver will be no more expensive than what it would have cost if those people were served in an institution. States feel more comfortable in expanding waivers rather than state plan services because they can control costs more.

No Duplicate Services — State Plans vs. Waivers

States can choose to cover a service in their Medicaid state plan or take a service that was in their state plan and put it in a waiver. But what they can’t do is duplicate services. Sometimes what states put in a waiver are additional benefits such as occupational therapy, physical therapy, and speech therapy…and keep services more restricted on the state plan (entitlement) side.

No Waiver Numbers Limitations

There used to be a limit on how many people could be served in a waiver. Now, however, that’s not true. The limitations on how many people in waivers are now determined by two things: 1) How much money for matching funds the states have, and 2) whether or not they have the infrastructure in the local communities to support the people living there.

Institutionalization Alternatives

Waivers only serve people who are eligible to be served in an institution. People whose disability is not severe enough to qualify for a nursing home or other institution cannot qualify for Home and Community-Based Waiver services.

Money Flow

There are some important things to remember about Medicaid regarding money. Medicaid is NOT a Cash Assistance Program. Medicaid purchases services.

Waivers Can Pay Family Members

Although Medicaid is not a cash assistance program, family members can be paid in waivers for being the caretaker or being a worker. The exception to this would be a parent of a child with a disability under 18 and a spouse of a person with disabilities.

Families and Individuals with Disabilities Can Direct Their Own Services

Families and individuals with disabilities can direct their own services and be in charge of payments to workers. There are many different approaches that can be used to empower families and consumers to be able to make the choices in their own lives.

Since the Supreme Court’s Olmstead decision, people living in institutions have a right to say “I want out!” as long as treatment professionals agree with it.

Waivers Cannot Pay for Room and Board

Medicaid will only cover housing costs in an institutional setting like a nursing home or an ICF/MR. Instead you need to persuade housing programs (for example through the federal Department of Housing and Urban Development or HUD) to pay for these services.

Session 8 Questions

1. Do you have Waiting Lists for waivers in your state? If yes, what do you know about them?
2. Are the income and asset limits for waivers different from the general Medicaid program?
3. Pick one waiver in your state you want to know more about, and research the specific services that are provided by the waiver? This information is in the state plan, and may be available in a brochure about the waiver.

SESSION NINE: Managed Care

What is managed care?

Managed care is a way of getting services through a health plan that coordinates many aspects of your care. Instead of finding their own doctors and seeing any doctor who accepts Medicaid, individuals must agree to follow the managed care organization’s (MCO) rules, which often include seeing only certain providers who participate in the MCO’s network. Individuals generally also have a primary care provider (PCP) who is their main doctor and who must give his or her approval before an individual can see specialists.

What types of managed care programs operate in Medicaid?

While managed care exists in many forms, there are two dominant models for such care: capitated managed care and primary care case management (PCCM) programs.

Capitated managed care programs transfer the risk for paying for health care services from the payor (the state Medicaid agency) to organizations that contract with the payor to deliver health care services, called managed care organizations (MCOs). Commonly, MCOs, in turn, often transfer some of the risk for paying for health care services from the MCO to physicians or other health care providers. Capitation involves paying an established fee on a per person per month basis for all persons enrolled in an MCO, whether or not an individual receives any services. In exchange, the MCO accepts responsibility for delivering all medically necessary services covered under the contract between the state Medicaid agency and the MCO. PCCM programs use many of the management techniques of MCOs, and Medicaid programs pay the PCCM agency a fee for providing management services. Unlike capitated programs, however, PCCMs are not at risk for the cost for health services, and Medicaid agencies continue to pay for health care services on a fee-for-service basis.

Can a Medicaid program require a beneficiary to enroll in a managed care program?

Yes. Congress enacted the Balanced Budget Act of 1997 (BBA), which paved the way for greater use of managed care in Medicaid. Previously, states that wanted to require Medicaid beneficiaries to enroll in managed care programs had to request federal permission, through a waiver. Now, states can require most Medicaid beneficiaries, except children with special health care needs and dual eligibles (i.e. persons enrolled in both Medicare and Medicaid), to enroll in an MCO without getting federal approval for this requirement.v

Session 9 Questions

1. Does your state Medicaid program use managed care options? Are people with disabilities required to enroll in managed care plans?
2. Can you explain either “capitated” managed care or a “primary care case management” arrangement? How are they different from one another?

SESSION TEN: Medicaid Appeal Rights

Medicaid is a public program that must comply with fairness and due process requirements that are guaranteed by the U.S. Constitution. This session contains helpful information about appeal rights in Medicaid.

What rights do applicants and beneficiaries have to appeal Medicaid decisions?

Medicaid beneficiaries must receive “due process” whenever benefits are denied, reduced, or terminated. The Supreme Court has defined essential components of due process for Medicaid to include: prior written notice of adverse action, a fair hearing before an impartial decision-maker, continued benefits pending a final decision, and a timely decision measured from the date the complaint is first made.

Medicaid also gives applicants and beneficiaries additional rights:

1. The right to request a fair hearing by a state agency for any individual who has been found ineligible for benefits, has been denied benefits, or whose request for services has not been acted upon with reasonable promptness.
2. The right to file an internal grievance within an MCO.
3. Medicaid beneficiaries may enforce their rights in federal court through a private right of action. This refers to an individual filing suit against a state Medicaid program in federal court claiming the state is denying him or her a right guaranteed by federal law.

What is a Medicaid fair hearing?

There are detailed requirements mandating how states can satisfy the fair hearing requirement. Medicaid applicants have the right to a hearing if they believe their application has been denied or if the states have not given them a decision within a reasonable amount of time. Beneficiaries who have enrolled in Medicaid have a right to a hearing if they believe the state Medicaid agency has made an incorrect decision, such as denying coverage for a service they believe they need. In most states, the state fair hearing decision can be appealed in state court.

What additional appeals rights apply to persons enrolled in a Medicaid MCO?

Medicaid beneficiaries can dispute MCO decisions or other features of the MCO in two ways: they can appeal an action or they can file a grievance. An action includes MCO activities such as denying a service; refusing to pay for a service; reducing or suspending the amount of a service it will authorize; or failure to act in a timely manner on a request for a service. MCO enrollees can also file a grievance if they are dissatisfied with activities of the MCO that are not actions. For example, if a health care worker treats an MCO enrollee rudely, or if the enrollee is unhappy with the quality of services received, the enrollee can file a grievance.

MCOs are required to give enrollees reasonable assistance in completing forms and taking other procedural steps. This includes providing interpreter services, when necessary, and ensuring access to toll-free TTY/TTD telephone lines. MCOs must consider and resolve grievances and appeals as quickly as the enrollee’s health requires, within state-established time frames. The maximum time an MCO has to resolve a grievance is 90 days, and the maximum time to resolve an appeal is 45 days. There is also a process for expedited appeals if a regular appeal would “seriously jeopardize the enrollee’s life or health or ability to attain, maintain, or regain maximum function.” The general standard for expedited appeals is three working days.

What is the relationship between the managed care grievance and appeal process and the right to a fair hearing?

Medicaid beneficiaries enrolled in MCOs have a right to a state fair hearing, but the state is permitted to decide whether it will require beneficiaries to go through the managed care appeals process before having access to a fair hearing. This is called an exhaustion requirement. In states without an exhaustion requirement, the state must allow individuals to request a fair hearing within a reasonable time frame (decided by the state). At a minimum, the state must allow an individual to request a fair hearing not less than 20 days from the date of notice of the MCO’s action. In no case can a beneficiary request a fair hearing more than 90 days after the date of notice of the MCO’s action. States with an exhaustion requirement can set a reasonable time frame for allowing individuals to request a fair hearing that is no less than 20 days and no more than 90 days from the date of notice of an MCO’s resolution of an appeal.

Where can people with disabilities turn if they need assistance navigating the appeals process?

Many community and national resources are available to help people with disabilities navigate the health system, including Medicaid. Individuals needing assistance are encouraged to check out the following resources:

• Protection and Advocacy Programs. Contact the National Association of Protection and Advocacy Systems (NAPAS) at (202) 408-9514 or http://www.napas.org for contact information for the protection and advocacy program in your state. The protection and advocacy system is a federally funded network that seeks to ensure that federal, state, and local laws are fully implemented to protect people with disabilities. While the capacities of state programs vary, many protection and advocacy programs actively assist people with disabilities in accessing Medicaid.
• Health Assistance Partnership. This program of Families USA (a national consumer advocacy organization) supports a network of consumer assistance programs (ombudsman programs) throughout the country. To find out if there is a program in your community, contact the partnership at (202) 737-6340 or infohap@healthassistancepartnership.org.
• Disability Advocacy Organizations. Many local, state, and national advocacy organizations assist people with disabilities to access Medicaid and resolve problems they encounter. Such organizations also may be a good way to get referrals to programs that assist people with disabilities in your community.vi

Session 10 Questions

1. Do you know an agency in your community that could help with a Medicaid appeal?
2. If you have had an experience with the Medicaid appeals process, briefly describe it.

SESSION ELEVEN: Medicaid and Community Supports

Medicaid and Community Supports

In this session you will learn how state plan (basic and optional) services and waiver services can combine to provide many different kinds of supports needed by individuals with disabilities to live in the community. We will begin by talking about the importance of the community infrastructure and various supports Medicaid programs can buy. We will then explain Home Health and Personal Assistance Services (PAS) and how consumer direction can play an important role in the success of PAS.

Community Infrastructure

You will need to put together what you have learned up to now in this Course on Medicaid to see the “big picture” of how Medicaid is important to a comprehensive community infrastructure.

When we use the word “community” we mean not in an institution. The community is a home where a person lives, and the place where a person works, plays, goes to school, to church, or travels, etc. We need to recognize all the different parts of a community in order to build the supports people with disabilities need to live in it.

Medicaid is a funding source that can be used to build supports for people who are eligible for it. If you start with the concept of “community” as a place where people live their lives – and the idea that people with disabilities have particular needs – you can fill in the gaps with individualized supports that allow people to live in as normal a way as possible.

Supports

Here are some examples of supports Medicaid programs can buy. These services may be available through the state plan (as either basic or optional services) or through a waiver. Services that are traditionally medical services are available through the state plan, while those services that are considered “wraparound” are offered through waivers.

• Respite
• Caregiver training
• Vehicle modification
• Home nursing
• Extra health care or therapy benefits
• Day support or supported employment services
• Summer camp
• Case management
• Communication aids
• Personal assistance
• Home modifications
• Adaptive equipment
• Emergency home response
• Dental care
• Crisis supports
• A Medicaid card
• Home Health Services

Home health services are a basic (mandatory) service in the state plan. A state may offer very limited services in the state plan but offer additional home health services to a specific group through a waiver. In home health services, a registered nurse may come to a person’s home to provide skilled nursing care or a home health aide may come to provide routine help with bathing or monitoring medications. These services are always provided in the home.

Play the audio clip, Session 11 & 12: Medicaid and Community Supports (Lee Bezanson).

Session 11 Questions

1. Read the list of community supports in Session 11 and see if you know someone who receives any of these services from Medicaid. Do you know if the service is “state plan” or “waiver”? How can you tell? Why is it important to know the difference?
2. Look up the Home Health Service section in your state plan. Who does it serve? What are the limitations?

SESSION TWELVE: Personal Assistance Services

Personal Assistance Services (PAS)

Personal assistance services can be an optional state plan service or a waiver service. PAS have been broadened in recent years so that under Medicaid they can be offered in the home, outside the home, in the school, and in the workplace. Personal assistance services (also called personal care) may provide a person with a disability help with bathing, dressing, eating or with meal preparation, shopping or house cleaning.

Consumer Direction

Consumer direction means that individuals with disabilities can direct their own services. Consumer direction can play an important role in personal assistance services.

Term Definition: homebound rule

A Medicare rule that states that people must be unable to leave home in order to receive homecare services. (Previously home services were only offered by Medicare to people who were homebound.)

Historically, consumer directed services were only available to people who could direct their own services. It is now being expanded to families who can use it for children and people with cognitive disabilities. Now many more individuals can enjoy consumer direction.

This is an important step forward for Medicaid, and increasingly you will see Medicaid programs offering self-direction and consumer directed services.

In order to find out how to obtain the kinds of supports Medicaid can provide, you must become familiar with your own state plan. This task sounds tedious and not very exciting, but if you know what to ask for, it can pay off in a big way for your advocacy.

For More Information

The Association of University Centers on Disabilities (AUCD) has a website that gives basic to advanced information on Medicaid: http://www.aucd.org.

The Arc of the United States has a website that provides a 2-page fact sheet on Medicaid programs offered by each of the 50 states and D.C.: http://www.thearc.org./medicaid/.

Session 12 Questions

1. Do you know anyone who receives Medicaid-funded personal assistance services (PAS)? Are their PAS services “consumer directed”? If yes, what does that mean for the person receiving PAS?
2. Does your state Medicaid program have options for consumers to direct their own services? Which services can have consumer direction?

SESSION THIRTEEN: New Freedom Initiative

The New Freedom Initiative is the name given to the efforts by the Bush administration to promote community living for people with disabilities. The goals of the New Freedom Initiative are to:

• Increase access to assistive technologies
• Expand educational opportunities
• Promote homeownership
• Integrate Americans with disabilities into the workforce
• Expand transportation options
• Promote full access to community life

The Centers for Medicare and Medicaid Services has given grants to help states change their Medicaid programs to promote more community living. The grant funds have been used to try out different approaches and find the best ways to help people with disabilities live in the community. Below are descriptions of some of the things that have been tried.

Cash and Counseling

The Cash and Counseling approach provides consumers with a flexible monthly allowance that is based on an individualized budget, which allows them to direct and manage their own personal assistance services and address their own specific needs. In addition, this innovative program offers counseling and financial assistance to help consumers manage their allowance and responsibilities by themselves or with the aid of a representative. These main features are adaptable to consumers of all ages with various types of disabilities and illnesses. Cash and Counseling intends to increase consumer satisfaction, quality, and efficiency in the provision of personal assistance services. The vision guiding this expansion is the promise of “a nation where every state will allow and even promote a participant-directed individualized budget option for Medicaid-funded personal assistance services.”

For more information visit the website: http://www.cashandcounseling.org/about/index.html.

Real Choice Grants

In 2001, President Bush launched the New Freedom Initiative, which promotes the goal of community living for people with disabilities. Under this initiative, 10 federal agencies have collaborated to remove barriers to community living. CMS awarded Real Choice Systems Change Grants to 49 States, the District of Columbia, and two territories, specifically to improve community-integrated services and remove barriers to community living. The grants opportunities are intended to provide states and other eligible entities with funding to make lasting improvements to their home and community-based services programs. Additional grants have been awarded to states under the Real Choice initiative in subsequent program years.

Money Follows the Individual Rebalancing Demonstrations

The Money Follows the Individual Rebalancing Demonstration can provide individuals with real choice in their long-term care under Medicaid and help bring states into compliance with Olmstead. Rebalancing means adjusting the state’s publicly funded long-term supports – to increase the availability of community options and reduce reliance on institutions – so the supply of available services reflects the preferences of older people and people with disabilities. Money Follows the Person refers to a system of flexible financing for long-term services that enables available funds to move with the individual to the most appropriate and preferred setting as the individual’s needs and preferences change. To the individual, the movement of these funds may appear seamless. People receiving supports, not providers or program managers, are supposed to drive resource allocation decisions as they move through the long-term care system.

The demonstration would appropriate $1.75 billion over five years for competitive grants to states that develop and implement a strategy to rebalance their long-term care systems. States would offer individuals a choice between living and receiving their long-term supports and services in an institution, at their home or in their community. The intended results are to reduce Medicaid spending on institutional care and increase use and spending on home and community-based supports and services, which would help re-balance overall Medicaid spending on long-term care. The demonstration would allow for self-directed services and encourage individuals to develop a plan of care and services that best fit the individuals’ needs.

For more information, on Money Follows the Person and Rebalancing go to: http://www.cms.hhs.gov/promisingpractices/mfp92903.pdf.

For more information

If you are interested in reading more about Medicaid reform proposals, go to: http://www.healthmanagement.com/files/NGA-HMA-23Feb2005.pdf.

Proposed Federal Legislation

MiCASSA

MiCASSA is proposed legislation in the U.S. Congress that calls for Medicaid funding to be used for personal assistance services and supports for people of all ages in their homes and communities, rather than only in an institution. The legislation would allow for use of Medicaid funds to pay for assistance with bathing, dressing, meal preparation, money management and certain health-related tasks. MiCASSA would change the Medicaid law by offering individuals who are eligible for Nursing Facility Services or ICF-MRs to choose where their services will be provided either in the institutional setting or in the community and administrated by community-based attendants. These services would be provided based on a functional needs assessment and agreed to by the individual receiving the services.

The MiCASSA bill outlines a variety of service delivery models such as vouchers, direct cash payments or via the use of a fiscal agent or the current state or nonprofit agency delivering the services. The key component of MiCASSA is that all services must be provided in the most integrated setting possible and appropriate to the needs of the individual. MiCASSA redirects the focus of the Medicaid long-term services program from institutions to home and community services and supports. It would enable people to make real choices.

Money Follows the Person Act

Another piece of proposed legislation is the “Money Follows the Person Act.” Introduced in Congress by Senators Tom Harkin (D.-IA) and Gordon Smith (R.-OR), it is an effort to put into bill form the President’s 2004 Budget proposal to encourage states to allow the money to follow the person, so people who are living in nursing homes or other institutions could have the money “follow them” as they move out into the community onto community-based services. The law would establish a demonstration project under the Medicaid program to encourage the provision of community-based services to individuals with disabilities. The bill allows for state and Federal Medicaid dollars to follow a person with a disability from an institution into the community.

“This bill does not replace MiCASSA,” says disability rights organizer Stephanie Thomas of the Center for an Accessible Society. This is a website that purports to provide disability issues information for journalists. “A communication clearinghouse providing journalists credible information and quotable sources on national disability policy and independent living issues.”
http://www.accessiblesociety.org/index.shtml.

Session 13 Questions

1. Does your state have one or more system change grants from CMS to promote community living for people with disabilities? Research on the Internet to find out what your state is doing in the area of Medicaid systems change. For a list of the 2004 grants go to: http://www.cms.hhs.gov/systemschange/2004awardedcontact.pdf.
2. Discuss how your CIL can contribute to, and/or benefit from, the work being done by a systems change grant in your state.

SESSION FOURTEEN: Tying It Together - Review of Course Three

“Laws can embody standard; governments can enforce laws—but the final task is not a task for government. It is a task for each and every one of us. Every time we turn our head the other way when we see the law flouted— when we tolerate what we know to be wrong—when we close our eyes and ears to the corrupt because we are too busy, or too frightened—when we fail to speak up and speak out—we strike a blow against freedom and decency and justice.' ~Robert F. Kennedy, Attorney General, 1961

These three online courses on Olmstead and Community have provided a good foundation and a basic framework for carrying out your goals of advocacy. This summary and culminating activity will help to tie all of the information together so that you may have good direction in your advocacy. Read each of the following summaries to refresh your memory on what you learned before you proceed to the exercises.

Course 1: Disability Policy and the Olmstead Decision

In Course 1: Disability Policy and the Olmstead Decision, Bobby Silverstein set the stage and provided us with the map or the framework from which we should build our advocacy plans. He also gave us a checklist to assist us in developing our goals and strategies. The methods of administration are a necessary part of implementation, and the planning model provides important and effective steps to help us in developing and implementing our advocacy plans.

Old Paradigm vs. New Paradigm

We learned about the old paradigm and contrasted it with the new paradigm. Bobby Silverstein also discussed the core precept, which is that disability is a natural part of the human experience and the approach should be to fix the environment; not the individual. Bobby talked about the importance of understanding history and the mind set of people so that we can address these issues and ensure that history does not repeat itself.

Four Goals of Disability Policy

We also learned the four goals of disability policy that we should address when being advocates, they are: Equality of Opportunity, Full Participation, Independent Living, and Economic Self-Sufficiency.

Equality of Opportunity

In the Equality of Opportunity Goal, we need to make sure that individualization is addressed. We need to remind lawmakers that every individual has a right to experience what everyone else experiences, and make sure we don’t get into the habit of using jargon or words that make people defensive such as “reasonable accommodation” or “program accessibility.” Instead, voice the fact that everyone should have an effective and meaningful opportunity to participate, and make sure that inclusion and integration are addressed. A person should not have to be segregated or separated in order to get a public benefit.

Full Participation

In Goal Two: Full Participation—we should make sure that individuals are empowered with information to make the best choice for themselves. They should be able to be involved in making decisions at the policy level.

Independent Living

Goal Three: Independent Living states that we need to make sure the system supports independent living. Does it provide personal assistance services, assistive technology, and cash assistance?

Economic Self-Sufficiency

The fourth goal, Economic Self-Sufficiency, addresses support in infrastructure such as education, employment, cash assistance, and work incentives.

The Olmstead Decision

The U.S. Supreme Court decision, known as Olmstead vs. L.C. shows how we can effectively use the goals of the disability policy or the framework that Bobby talked about. Lois Curtis and Elaine Wilson became victorious and were able to live in the community instead of an institution. We learned about the conditions that led to the Olmstead decision and learned how the Olmstead decision can affect each of our own states and living situations.

Planning Model

The planning model lists four important steps to take in developing and taking action on your advocacy plan: 1) Take stock, 2) Set goals, 3) Develop strategies and take action, and 4) Document progress.

Course 2: Consumer Direction and Living in the Community

Course 2 helped us understand the infrastructure or the supports necessary (i.e., housing, benefits, community access, and PAS) in the community so people with disabilities can live independently outside of institutions.

Consumer Direction

The sessions on Consumer Direction helped us understand the important principles of consumer direction, self-determination, and consumer control. In each of these concepts, persons with disabilities can take control of what happens in their lives by being involved in decision-making.

Continuum of Consumer Direction

Consumer directed approaches were compared with professionally managed services and assisted us in understanding the supports available to help consumers who want to direct their own services.

Getting People Out of Nursing Homes and Other Institutions

We learned important things about either helping ourselves or someone we care about get out or stay out of nursing homes. Tony Records helped us imagine what it’s like to live in a nursing home. Mike Oxford gave us ideas on how one CIL has advocated to obtain supports in the community with few resources. We read about the barriers such as changes, responsibilities, and risks that may prevent people from leaving nursing homes, and we listened to Bob Kafka and Mike Oxford discuss strategies to overcome the barriers

Issues for Advocacy in Consumer Direction

The final two sessions explain the issues and concerns that are important to understand if we become involved in advocating for increased consumer direction; such as stereotypes and assumptions about the consumer’s age, controversy about paying family members, assuring quality in home health, and quality performance of skilled nursing tasks.

Session 14 Questions

1. What principles did you learn from the Olmstead decision that will help you be a better advocate?
2. How can principles of consumer direction and self-determination help to make a smoother transition for a person moving into the community? How can these principles help you in your advocacy plan?
3. What kinds of infrastructure supports do you need to have set up in the community? What obstacles or barriers do you foresee that you or an individual with a disability may need to address and overcome?

SESSION FIFTEEN: Applying Your Advocacy Skills

The main purpose of course three is to learn the technical details about the Medicaid program in order to use the information to support individuals with disabilities in the community. In this final session we want you to use what you’ve learned and develop a plan for advocacy.

What Medicaid services and supports would be beneficial and effective in your advocacy plan? Would basic services be sufficient or would state waivers be more helpful? What is your plan of action for these supports? Take the information you have learned about the Medicaid program in your state, and develop a plan for community living.

At the end of Course One of this series of Olmstead and Community, you were asked to develop an advocacy plan. You chose an issue for which you wanted to become an advocate. Here’s a review of the four-step planning model:

1. For your advocacy goal, take stock—review the situation. Find out what has led to the problem or issue. Identify actions that may have been taken previously and what the results were. Bobby Silverstein recommends taking time to “understand the history.”
2. Set goals—identify a specific and measurable outcome that you would like to see happen. These are smaller steps that will lead to the accomplishment of your main advocacy goal. Specify goals that are consistent with the core precept (disability is a natural part of human experience; and fix the environment not the person). The more specific the goal, the easier it will be to measure progress. A broad, long-term goal can be broken into smaller steps to better understand and illustrate the planning model.
3. Develop strategies and take action—decide what action to take. Identify the approach you will use to solve the problem and take action. Develop strategies that are consistent with the four Goals of Disability Policy.
4. Find out if your methods are effective—document progress. Record the results of the actions that were taken. By reviewing progress, you are again “taking stock” of the situation to decide if the actions have been effective— and if progress has not been made, repeat the steps of the planning cycle with new, improved strategies until the goal is completed.

Session 15 Summary Application

Spend some time thinking about your goal. An advocacy goal should be concrete and measurable. Ask yourself, “How will I know if my goal has been achieved?” or “How can I tell if my plan has been successful?” If you can answer these questions then your goal is measurable.

For this final exercise, choose an individual advocacy goal. Think of an individual (you may choose yourself!) who wants community supports. What can you do as a CIL staff person to develop those supports? What kind of an advocacy plan will be effective?

Even if your long range goal is to affect an entire system (for example, the system of personal assistance services), and if your strategies involve system advocacy (for example, changing personal assistance policy), begin by thinking of one individual who will benefit. With that individual in mind, develop your advocacy plan.

Follow the four step planning model: 1) Take stock; 2) Set goals; 3) Develop strategies; and 4) Evaluate progress. You may also want to reference Bobby Silverstein’s checklist of questions about your own issue for advocacy. Use these two resources for developing and measuring an advocacy plan.

Now that you have been through all of the courses and have your advocacy plan developed and strategies in place, the next step is to take action and follow your plan so that you can perform the last step of the planning model: document progress. Remember this is a crucial part of implementing your plan.

Effective advocacy takes time. Be patient, but never give up.

“Keep your face to the sunshine and you cannot see the shadow.”
Attributed to Helen Keller

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i William, B., Claypool, H, Crowley, J.S., Navigating Medicare and Medicaid, 2005: A Resource Guide for People with Disabilities, Their Families, and Their Advocates, Henry J. Kaiser Family Foundation, February 2005, pp. 35–36.
ii Ibid., p. 38.
iii Ibid.
iv Ibid., pp. 42–44.
v Ibid., pp. 44–45.
vi Ibid., pp. 47–49.