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

Manual for Course II: Consumer Direction and Living in the Community

Authors:
Judith Holt, Ph.D.
Helen C. Roth, MS
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:
Holt, J., Roth, H. C., Petty, R. (Authors). (2005). Consumer Direction and Living in the Community (Course Two). 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 |
Session Two: Defining Consumer Direction |
Session Three: Self-Determination and Consumer Control |
Session Four: Consumer Directed Home and Community Services |
Session Five: Consumer as Employer: A Big Responsibility |
Session Six: Myths About Consumer Direction |
Session Seven: Supports for Consumer Direction |
Session Eight: Introduction to Community Transition |
Session Nine: Building an Infrastructure of Support |
Session Ten: Barriers and Transition |
Session Eleven: The Myth: Nursing Homes are Safe, Communities are Dangerous |
Session Twelve: Low Cost Resources |
Session Thirteen: Issues for Advocacy in Consumer Direction and Community Living: Part I |
Session Fourteen: Issues for Advocacy in Consumer Direction and Community Living: Part II |
Session Fifteen: Summary and Preview of Course Three |

PREFACE

Welcome to Course Two of the three-part training on Olmstead and Community. In 2005, we recall the tenth anniversary of the death of Ed Roberts who is known as the Father of Independent Living. He initiated the first Center for Independent Living and was primarily responsible for Independent Living Philosophy as a guiding light. Early in the 1970s, he wrote in a letter to a mentor, “I’m tired of well meaning non-cripples with their stereotypes of what I can and cannot do; directing my life and my future. I want cripples to direct their own programs and to be able to train other cripples to direct new programs. This is the start of something big—cripple power.” This was an innovative and powerful statement at the time and reflects important principles that underlie our efforts today — consumer direction, community living and advocacy. Over the three weeks or 15 sessions of this course our objectives will be to:

• Understand consumer direction and the related concepts of consumer control and self-determination and how they can empower people with disabilities to plan and direct their own services.
• Consider how the concept of “consumer direction” can assist people who want to leave institutional settings (such as nursing homes) to live in their own community with the supports that they need.
• Learn how to generate supports and an “infrastructure” that are needed in the community to enable people with disabilities to live independently outside of institutions.
• Understand the barriers that prevent people from leaving nursing homes and learn about strategies to eliminate barriers and support effective transition from nursing homes into the community.

Each session is full of useful information. Read the manual carefully, take note of the references, and listen to the audio instruction that accompanies this manual. The outcome will be to strengthen your efforts—the efforts of many–to forge a world that is happily diverse and inclusive as people with disabilities take their rightful and natural places in their communities and society.

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, the BIA, Inc., and 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 version of the material.

The leaders and staffs of ILRU, the 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 Two: Consumer Direction and Living in the Community

Olmstead and Community

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

Course Description, Context, Objectives and Listing of Audio Modules

Course Two covers consumer direction and provides a fresh look at implementation of a core independent living precept. The course will aid learners in enhancing consumer direction in their own organizations and in advocating for consumer direction in all services and supports for persons with disabilities.

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 Two Objectives:

• Understand how consumer direction can empower people with disabilities to plan and direct their own services.
• Learn how the concept of “consumer direction” will assist people who want to leave institutional settings (such as nursing homes) to live in their own community with the supports that they need.
• Learn about supports or an “infrastructure” that is needed in the community to enable people with disabilities to live independently outside of institutions.
• Understand the barriers that prevent people from leaving nursing homes and learn about strategies to support effective transition from nursing homes into the community.
  

List of audio files and corresponding sessions:

Session 2: “What is Consumer Direction?”- (Suzanne Crisp and Judy Heumann)
Session 6: “Myths of Consumer Direction”- (Suzanne Crisp)
Session 8: “A Day in the Life”- (Tony Records)
Session 9: “On Community”- (Bob Kafka)
Session 10: “One Person at a Time”- (Mike Oxford)
Session 11: “Nursing Homes = Safe?”- (Mike Oxford)
Session 12: “Low Cost Resources”- (Mike Oxford)

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

“The day the agency sent another new aide to assist me was the time I finally decided to take charge of my life. This was the sixth different aide that I had had in four weeks. They were all nice and willing to help, but I was tired of training them! With my disability, it is very difficult for me to move and I need assistance in just a certain way. It would take me several days (and a lot of unnecessary pain) before the aide was able to position me correctly. Then the aide would be gone and I had to start with another one. My neighbor in the apartment upstairs had always been willing to assist me when I needed help and I realized that if I could pay her as a personal assistant, then I would have a lot more consistency in my life and less stress.”

What you just read is an example of a person who decided to plan and direct her own services. She realized she could have control and she could practice consumer direction. Whose life is it, anyway?

For the most part over the years, services intended to assist people with activities of daily living have been under the control of professional staff in institutions such as hospitals, nursing homes and other institutions. The people needing the assistance, whether young or old, had little to say about who assisted them, when and where the assistance took place, or how the assistance was carried out. Most people living in the United States would be appalled if someone else tried to make their decisions for them, but that’s how it was for people receiving publicly funded services up until Ed Roberts and others across the country around 1970 started to insist on taking charge of their own lives and making their own decisions. In recent years has there been a general trend toward recipients taking charge.

In this course you will learn about consumer direction. Consumer direction means that people with disabilities, including older people, can plan and direct their own services. This course explains why many consumers want to direct their own services, and also describes some of the supports that are available for consumer direction.

Self-determination and consumer control are related concepts. By increasing your understanding of these approaches, you can advocate for more consumer direction, self-determination, and consumer control in your community. These are the key principles you will learn:

• The underlying philosophy of consumer direction and the related concepts of self-determination and consumer-control
• How home and community-based services (HCBS) can be provided through consumer direction
• About advocacy issues in consumer direction
• How consumer directed approaches differ from professionally managed approaches
• What community supports are necessary and which may be available to help consumers who desire to direct their own services

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.

Your work is entirely independent; you do not submit assignments, but you are encouraged to prepare written responses to the assignments and keep them in a course notebook.

Your level of learning will depend on the amount of effort and time you apply to the course and on your willingness to do all the tasks necessary to respond to the exercises in this manual. You may need to interview disability leaders, public officials and even the staff of your own organization in order to answer some of the questions. The authors encourage you to “dig deep.”

If you get stuck, don’t hesitate to contact ILRU. We can 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.

For this session –

1. Read the preface and this first section.
2. Review the entire course manual; note the upcoming sections.
3. Locate the audio segments on CD
4. Create a course notebook for yourself where you can record your answers to exercises
5. In your course notebook, write a brief statement about what you hope to gain from the course.

SESSION TWO: Defining Consumer Direction

Consumer direction means that an individual with disabilities can plan and direct their own services. Within this session, you will read about the factors that influenced the expansion of consumer direction and you will get to hear Suzanne Crisp define consumer direction. Expansion of consumer direction did not occur suddenly but rather was the result of advocacy and pressures primarily from consumers but also within society itself.

Benjamin (2001) identifies these as:

• Three decades of aggressive advocacy by non-elderly persons with disabilities increased political pressure to expand publicly-funded, personal-assistance services that give consumers more autonomy to direct their own “care” (quotes added).
• Consumer movements called for the “demedicalization” of some conditions (such as disability, old age, and pregnancy) and services (such as supportive home “care” [quotes added] and childbirth) so the message of consumer direction has a broader context.
• Concerns about the costs of long-term “care” (quotes added) made federal and state policymakers receptive to home-based service approaches considered to be less costly. Because consumer direction reduces or eliminates the need for home care agencies and case managers, service costs are expected to be lower.
• The recent shortage of front-line workers also increased receptivity to new strategies for recruiting long-term “care” (quotes added) providers. For example, if recipients can hire family and friends as workers, this may help to address widespread difficulties in attracting workers to low-paying jobs in home “care” (quotes added).
• The Supreme Court’s 1999 Olmstead decision has put additional pressure on states to consider diverse approaches to providing community “placements” (quotes added) and services for persons with disabilities.

Advocacy pressures, cost issues, and lack of personnel in traditional services have all been instrumental in providing more opportunities for consumers to direct their own services.

Read Suzanne Crisp’s biography and then listen as she discusses and defines con sumer direction and self-determination in this section of audio.

Biography: Suzanne Crisp

Suzanne Crisp directed a Cash and Counseling Demonstration Project in Arkansas that enabled participants to gain greater control in decision-making, including hiring their own workers, and determining which services they need along with how much service they actually receive. Suzanne is currently the Senior Research Leader for The MEDSTAT Group and is engaged in addressing a variety of fiscal management services for persons with disabilities who choose to direct their own services.

Play the audio clip: “What is Consumer Direction?” (5 minutes). When finished, proceed to the exercises below.

Application and Discussion

1. Some factors that contributed to the expansion of consumer direction were listed. List some other factors in our country today that are helping the movement toward greater consumer control and direction?
2. How is quality of life enhanced by consumer direction?
3. What is your opinion of Judy Heumann’s description of self-direction: “It’s not doing things by yourself, but being in charge of how things are done?”
4. When Suzanne Crisp was describing the stereotypes for elderly people who needed assistance, she sarcastically used this statement: “It’s okay to be a mind reader for an aged person.” What did she mean?
5. Are consumers the best judge of what their needs are and the approach to meeting those needs? Why? Why not?
6. Can you provide an example of an instance where you were the best judge of your needs? And an instance when you weren’t the best judge of your needs?
7. What is a cross-disability advocate?
8. In each of the scenarios below, what are these people practicing?

• An elderly person who has severe arthritis and can’t cook has an aide help her fix her favorite recipes.
• A man who uses a wheelchair hires his nephew to come by each morning and help him get ready for work.
• A young woman with cognitive disabilities has hired her sister to help her balance her checkbook and make her weekly grocery list.
• Parents of a child with a disability have employed the child’s aunt to help bathe and dress her each day.

SESSION THREE: Self-Determination and Consumer Control

Before looking at specific steps for achieving consumer direction, we will briefly discuss the philosophy of other related concepts that Suzanne Crisp mentioned in the audio: self-determination and consumer control. These terms reflect a consumer focus in services and advocacy that is having a significant impact on home, school, and community services for people of all different ages with all types of disabilities.

After that, we will examine how these concepts are a critical component of transition. It is important to understand that the values underlying these interrelated concepts are the same: A person with a disability should be a full participant in their community and have control over the types of services they receive and how these services are provided.

Self-Determination

The idea behind self-determination is that a person has choices, preferences, and dreams. These choices, preferences, and dreams must be respected and should also serve to guide the services and support that people, both young and old, need. The skills that promote self-determination include self-management, self- advocacy, choice making, problem solving, decision-making, and goal setting.

With the opportunity of self-determination, also comes responsibility that can sometimes be frightening.

Some may ask “So, as a person with a disability, do I have to do everything?”

People with disabilities should not have to make all their decisions by themselves, just as people without disabilities rely on others to support them.

In self-determination, an individual may invite friends and family members (in a “circle of support”) to assist in directing and managing services. Various methods have been developed, such as “person centered planning,” to help the person clarify and express personal preferences.

“Person centered budgeting” is an approach to help people use public resources to assist in achieving their goals. A person’s legal representative, family members, or substitute decision-maker may assist and advise the individual and help with management tasks.

Consumer Control

Self-determination and consumer control are not totally different. Consumer control is another way of describing who should be in charge.

• Consumer control implies that individuals with disabilities should have control over their own services based on their choices, preferences, and dreams.
• Consumer control also means that the power and authority within organizations that provide services to enhance independence and to advocate for social change should be directed by consumers.
• Individuals with disabilities should have the power to decide the priorities and the activities of the organization in overcoming the community barriers encountered by its consumer population.
• In the school system, the “parents as expert” philosophy means that for younger children, special education should be designed and guided by the family who know their child best along with abundant input from their child with the assistance of a team of qualified professionals.

Self-Determination: A Critical Component of Transition

The transition from school to work and community is one of the first times in their life when youth have the opportunity to assume a more adult role and thus, more responsibility and control. To promote self-determination during transition, it is important for families and the person’s support system to:

• Assist students to develop greater self-awareness and to learn decision-making. Provide opportunities for youth and young adults to learn other skills that they need to plan their future, such as goal setting and negotiating.
• Allow youth to make decisions and experience consequences of their actions. By doing this they can learn the skills needed to become self-directed. What’s exciting is that the Individuals with Disabilities Education Act (IDEA) Amendments of 2005 clearly support student self-determination.

IDEA requires that:

• Students are involved in the development of their individualized education program (IEP) as members of their own IEP teams and that they attend their IEP meetings as an active participant.
• Student’s educational programs must be based on the student’s preferences and interests. As the philosophy of consumer direction becomes integrated into more and more disability programs and policies, it is important for youth to develop these crucial skills.

Families and supporters must understand that the development of these skills should be a part of the “child raising” and growing up process from the beginning just as they are for nondisabled children and should not be put off until the time of transition although they are particularly important at that time. Consumer direction is a broad concept that applies to all aspects of a person’s life including a broad range of services and supports for persons with disabilities such as assistive technology, employment, education, and recreation.

Application and Discussion

1. What do you think about Judy Heumann’s quote “Nothing about me without me?” How does this relate to consumer direction?
2. What does the term, self-determination, mean to you? Is there a self-determination project in your state? How did you determine the answer?
3. Are you aware of any consumer-controlled organizations? Do you belong to any? Explain?
4. What are some strategies that parents can use to assist youth to assume consumer direction in their lives? Is this a simple one-step process? Why or why not?
5. Scenario: John is 29 years old and has lived in a nursing home since he was 10 years old. He has a severe spinal cord injury and needs oxygen, uses a wheelchair, and cannot speak. He has a head pointer and a communication board. He wants to live in the community. How easy do you think it would be for John, who has not been accustomed to making decisions, himself, to become self-directed? What problems do you think he may experience? Provide examples.
6. What role might a CIL play in helping John learn the skills he will need to live in the community? Can you think of specific activities for advocates to help John?

SESSION FOUR: Consumer Directed Home and Community Services

Home and community service programs funded by Medicaid are frequently criticized for operating under a so-called “medical model” or professionally managed model. In this model, professionals decide what services will be provided, how they will be provided, who will provide them, and where and when they will be provided.

Many individuals with disabilities feel that current agency-directed approaches for home and community services do not meet their needs. Consumer direction is a trend

TABLE I.

that separates needs for medically trained providers from needs for routine daily living supports. All people have preferences for how personal-care tasks should be done. The consumer direction philosophy says consumers should have more control and choice in their own routine daily living supports.

One of the most commonly used services required by individuals living in the community is personal assistance. Personal assistance refers to non-medical services that a person needs to live including help with personal activities and other routine living needs such as:

• Bathing
• Dressing
• Eating
• Cooking
• Shopping
• Housekeeping

When service needs are greater than what family members or friends can provide, these services typically have been provided by home care agencies. These agencies send nurses, therapists, and aides into the home to deliver both medically related home health services and non-medical personal assistance.

Consumer directed and professionally managed services: A Continuum

Consumer directed services and professionally managed services are two ends of a continuum. It is important to understand that consumer direction does not have to be an “all or nothing” choice. Individuals and families differ in the extent to which they want and are able to take on full management of their services. Some people want a high level of control over their services and supports, while others prefer a provider agency to manage their services—so long as the agency is responsive to their needs and preferences. Still others prefer to mix their control, with agencies managing some supports, and the individual directing others. People should have a choice on how much control they want to maintain that can vary according to circumstances and situations. As an increasing number of people with disabilities take on the responsibilities of directing their own lives, they find that they need to learn many new skills to be effective. It is important that consumers understand the scope and difficulties of the new responsibilities. The following examples illustrate some differences between consumer direction and professional management.

Consumer Directed

Clara Jones is 24 and has cerebral palsy that requires use of a power wheelchair and assistance in bathing, dressing, and meal preparation. Clara lives in her own apartment down the street from her parents. She works part-time and attends college.

Clara receives self-directed home and community supports from Medicaid. These flexible supports allow her to hire her own attendants, to set their wages, and to arrange their schedules around her own busy life. At first she had difficulty finding dependable workers that she could rely on. But she found someone who was willing to live in her apartment and help her in the mornings and evenings in exchange for rent. Her family members are near in case her attendant isn’t available. As an increasing number of people with disabilities take on the responsibilities of directing their own lives, they find that they need to learn many new skills to be effective.

Professionally managed

Marty Jasper is 31 and has a brain injury from a car accident 10 years ago. Marty needs reminding to take his medications for seizures, and needs help in managing his money. Marty receives SSI and has a job stocking parts at a hardware store. Marty lived with his Mother until she died a year ago. A social worker arranged for Marty to have a personal assistant under the Medicaid Home and Community-Based Services Waiver program so that he could get the help he needs and be as independent as possible. The assistant helps him with his medications, the household bills and home maintenance so he can continue to live in his home. An agency monitors the situation and takes care of all wage payments and tax withholding and reporting. The agency also supervises and evaluates the work of the assistant.

Application and Discussion

1. What is exciting to you about consumer directed services for consumers? Families? CIL staff?
2. Should all services be consumer directed? Why? Why not?
3. If youths with disabilities have difficulty communicating their wants and needs, is consumer direction still possible?

SESSION FIVE: Consumer as Employer: A Big Responsibility

Individuals who want greater self-direction need to understand the extent of the responsibilities they are undertaking. Table 1 lists the tasks that are necessary to employ a person to perform personal assistance services. The left column lists the responsibilities, the middle column lists who is responsible under a strict consumer directed approach, and the right column lists who performs the task in a purely professionally managed approach. Again, it is important to remember that there is a continuum between consumer directed and professionally managed responsibilities in which the consumer may perform some tasks and the professional other tasks. It is clear that many consumers would need some training in order to carry out all of these new responsibilities. Each one of the tasks involves several steps and some specialized knowledge. The financial tasks alone involve knowing some tax law and then withholding the appropriate amount of taxes from employee paychecks and submitting the correct amount and records to the IRS. It is common for consumers to want to take control of and perform all the tasks listed except for the financial responsibilities. Many programs that offer consumer direction employ what is called a fiscal intermediary to prepare pay checks each pay period and to take care of all tax matters however there are some programs that require the consumer to undertake all employer tasks.

Application and Discussion

1. What is challenging about becoming an employer? For consumers? Families? CIL Staff?
2. What role, if any, can CILs play with consumers who assume their own employer responsibilities?

SESSION SIX: Myths About Consumer Direction

Myths of Consumer Direction

A consumer directed, federal demonstration project known as Cash and Counseling was funded by the Robert Wood Johnson Foundation and tested in three states (Arkansas, Florida, and New Jersey). Twelve more states are now funded to further test Cash and Counseling: Programs: Alabama, Kentucky, West Virginia, Rhode Island, New Mexico, Michigan, Illinois, Minnesota, Washington, Vermont, Iowa and Pennsylvania. In this model, consumers receive a monthly cash allotment that can be used to purchase any services or goods they consider essential.

Early reports suggest that some consumers make very different choices than typical professional choices. Consumers used the cash for home modifications and furniture purchases that facilitate mobility but are not covered by Medicaid. Recipients can manage cash directly or pay a small fee to have a certified fiscal agent manage the funds. Most have chosen to use the fiscal agent. The counseling part of the program involves peer professionals who are available to provide consumers with information to enable them to make informed decisions.

Listen to Suzanne Crisp discuss the myths about consumer direction that she has encountered in her experience in the Cash and Counseling program in Arkansas.

Play the audio clip: “Myths of Consumer Direction” (2 minutes).   When finished, proceed to the exercises below.

Application and Discussion

1. What do the myths reflect about stereotyping people with disabilities?
2. How would you respond to each of the myths? Are they myths or are they truths? Write M for myth or T for truth.

___ Misuse of money
___ Abuse and exploitation
___ Not interested
___ Lack ability
___ Health will decline
___ Too vulnerable
___ Case managers know best
___ Agency services are superior

3. Why did you answer the way you did? Have you or anyone you know had experiences with people believing some of the myths?

SESSION SEVEN: Supports for Consumer Direction

Many states and communities have been trying out various ways to support consumers who want to have more control over their services, yet do not want to take on all of the responsibilities. Some consumers are afraid of the risks involved with consumer direction, while others feel they don’t have the necessary knowledge and skills.

There are agencies that can help individuals who are willing to take on some consumer direction tasks. Supports for consumer direction can lessen the risks and burdens on the consumer or family. Not all of these supports may be available in your community, so you will have to investigate to find out what is available. The supports discussed here consist of coordinators (brokers, agents, and counselors), and assistance with recruiting and hiring, scheduling, training, paying workers, and setting worker qualifications.

• Coordinators (Brokers, Agents, and Counselors): Assistance for individuals in managing and directing their home and community services and supports can be provided by paid professionals who are variously termed service coordinators, support brokers, personal agents, or counselors. This new terminology underscores the philosophical differences between professional case/care management as typically practiced and supporting individuals in directing and managing their own services. Assistance can also be provided through peer counselors and staff at independent living centers.
• Recruiting and Hiring: Public programs may help in identifying potential personal assistants by maintaining a worker “registry” or list of available or qualified candidates. Programs may help the consumer perform a criminal background check for potential employees. Employment or other programs may be of help in knowing how to conduct and evaluate interviews with candidates.
• Scheduling: Consumers negotiate with workers for the times they need them, although Medicaid will limit the maximum number of hours authorized in a time period (e.g., in a month). However, sometimes workers do not show up or the consumer needs emergency assistance. An emergency backup plan should be developed. Sometimes agencies will agree to be part of a backup plan in emergencies (with the understanding the consumer is responsible for their fee).
• Training: Two types of training are available. Training for the consumer to learn how to direct his/her own services may be offered through an independent living center or other community organization.

Training for the personal assistance worker may be available through a local community high school or college, or the Internet, such as Certified Nurse Assistant (CNA) training, or First Aid training. Or consumers may want to do all of their own training of assistants.

• Paying Worker(s): As stated previously, consumers who use the self-directed model say that the most difficult task is paying the employee and handling all of the associated paperwork. This paperwork includes preparing paychecks twice monthly, figuring the right amount of payroll taxes to take out, filing reports with the Internal Revenue Service, figuring out how much money is left to pay for services, making reports of how the money was spent, and so on.
• Fortunately, some organizations are developing special services to assist consumers with these financial and reporting tasks. There are several terms used for these kinds of organizations. Intermediate Services Organization (ISO) is the term used by the federal Internal Revenue Service. Other terms used are Fiscal Intermediaries, Personal Services Agents, or Fiscal Agencies.
• Setting Worker Qualifications: Services that are paid for with Medicaid funds must have minimum qualifications for providers of any service, whether consumer directed or professionally-directed. Medicaid is a public program and is accountable to taxpayers for how money is spent. But qualifications for providers (workers) are in the domain of the state according to state and local laws and regulations.

As a result, state Medicaid programs may have different qualifications for providers within consumer directed programs than for providers in professionally managed services. Keep in mind, however, each state has its own minimum qualifications for assistants. Listed below are some examples of minimum provider qualifications for personal assistance services.

• 18 years of age or older
• Social Security number
• Ability to understand verbal instructions
• Ability to record written notes
• First Aid Certification
• Willingness to undergo criminal background check

Consumers or their supporters must remember to check with their state Medicaid agency to find out what the provider qualifications are for particular Medicaid services.

A consumer may require a worker to have other skills or abilities in addition to the basic minimum qualifications for a provider. For example, the ability to transfer a 180 pound adult in and out of bed or to have a driver’s license. An employer (consumer) can require certain qualifications to meet particular needs for assistance. Suggestions for relevant provider qualifications may come from other consumers who have used personal assistance.

Application and Discussion

1. How many of the support listed in the narrative are available in your community ? Is there a registry or list of personal assistants? Do you know what agency (ies) maintain a list? Is training or preparation for consumers offered? Where?
2. Ask a consumer who directs her/his own services how she/he learned to undertake or accomplish the tasks required to do it.
3. What are the minimum provider requirements for personal assistants in any Home and Community-Based Services Waiver your state might have? (Hint: you may find this out by viewing information produced by your State Medicaid agency. Some states have state plans and other information posted on the Web. You can also consult with advocates, policymakers or other leaders in your State.)
4. How do you feel about consumer directed services? Why?

SESSION EIGHT: Introduction to Community Transition

Julie is 32 years old and has been a resident of Sunshine Valley Care Center for 5 years following an auto accident. Her family was killed in the crash and she had no close relatives to assist her. At first she needed a lot of medical care, physical therapy, and speech therapy. Now she mainly needs help with bathing, getting in and out of bed, toileting and remembering to take her medication for seizures. She hasn’t had a seizure for over 6 months, and can sense ahead of time when she is going to have one. A few months ago Julie heard about a program to help Sunshine residents move out of the nursing home. Julie didn’t sign up for the program because the staff told her that she needs 24-hour “care” because of her seizures. Julie is disappointed to think she will have to live at a place like Sunshine the rest of her life.

Julie doesn’t have to live in a place like Sunshine the rest of her life. Centers for independent living can play an important role in their states in implementing the Olmstead decision. The Supreme Court decision supports people with disabilities, like Julie, to receive services in the community. This session will provide some practical suggestions on how to get started. In this course, we use the term “nursing home” to refer to institutions warehousing people with disabilities. Please remember that there are other institutions besides nursing homes in your community, and that the information presented here is intended to apply to all institutions. With this information you will:

A Day in the Life of a Nursing Home Resident

Read Tony Records’ biography and listen as he describes the day he spent with one individual resident who lived in a nursing home because he needed around the clock care.

Biography: Tony Records

Tony Records has 30 years of experience in services and supports for people with disabilities. He has served as a consultant with the Office for Civil Rights of the US Department of Human Services to assist in evaluating states’ planning documents for complying with the Olmstead decision. Since 1992, he has been the President of Tony Records and Associates, Inc., a human services consulting firm in Bethesda, Maryland.

Play the audio clip, “A Day in the Life” (2 minutes).  When finished, proceed to the exercises below.

No one says that moving people with disabilities from institutions to the community is easy. Many, many people, however, say that it is necessary! If you are concerned about convincing the staff and board at your center, the service providers in your community, or your local and state policymakers that it is necessary, consider accepting the challenge that Tony Records offers.

Application and Discussion

1. How does Tony describe life in a nursing home?
2. What was the reason Tony surmised that people in nursing homes sleep so much?
3. Why did Tony leave at 8:30 p.m.?
4. Who did the resident have the longest conversation with?
5. Why did the nurse say the resident had a good day?

SESSION NINE: Building an Infrastructure of Support

In order for people with disabilities to remain in their own homes or to move out of nursing homes, supports have to be available in the community. Making sure that these supports are available involves building an infrastructure. The infrastructure needed to support people with disabilities to live independently in the community includes the following resources:

• Housing
• Financial Security/benefits (including such as SSI, SSDI, Medicaid, Medicare)
• Community access (including transportation and social contacts)
• Personal assistance.

Many centers for independent living are already involved in building an infrastructure through their systems advocacy efforts. Some communities have created a Community Alliance consisting of all the local agencies that might contribute to the infrastructure such as Housing Authorities, Transportation Districts, churches, and many other community resources that meet regularly. Read the biography of Bob Kafka and then listen to the audio as he describes the strategy ADAPT (American Disabled for Attendant Programs Today) used to identify and coordinate local resources.

Biography: Bob Kafka

Bob Kafka, co-founder of Texas ADAPT (a grassroots advocacy organization), is a nationally recognized leader in the disability rights movement. His commitment to in-the-streets, in-your-face advocacy, and civil disobedience has contributed to such victories as the passage of the Americans with Disabilities Act, the introduction of Medicaid Community-Based Attendant Services and Supports Act (MiCASSA), and the granting of state Medicaid waivers.

Play the audio clip, “On Community” (2 minutes). When finished, proceed to the exercises below.

Application and Discussion

1. Describe the parts of the infrastructure (including housing, financial security/benefits, community access, transportation, and personal assistance) that are present in your community? What parts are missing?
2. How can your center/organization help get those missing parts in place?
3. What other supports are necessary for successful transition to community living?

SESSION TEN: Barriers and Transition

The thought of building an infrastructure, to support people with disabilities coming out of institutions, can be daunting. Note that the transition process will involve changes not only in the community, which may be one barrier, but it will involve changes for the individual and the way he or she looks at the options and risks. This can be another barrier.

In the next portion of the audio, Bob Kafka and his colleague, Mike Oxford, describe how they approach this issue one person at a time. Leaving an institution for the community is a complicated process and involves having the specific personalized supports available in the community and also effectively meeting an individual’s concerns. Bob and Mike each describe barriers as well as successful strategies for addressing the barriers as well as planning transition activities. Mike will also describe three steps involved in helping people make successful moves into the community:

• Identify people who want to live in the community.
• Understand why they went into the nursing home in the first place. What supports were missing?
• Provide support for emotional, social, and physical needs.

Read Mike Oxford’s biography below and then listen as Bob and Mike talk about their approach to tackling the transition process one person at a time.

Biography: Mike Oxford

Mike Oxford is the Executive Director of Topeka Independent Living Resource Center, Inc. and was the President of the National Council on Independent Living (NCIL). He is a leader in ADAPT and is committed to “freeing our people” from nursing homes and institutions.

Play the audio clip: “One Person at a Time” (20 minutes). When finished, proceed to the exercises below.

Application and Discussion

1. Wouldn’t it be easier just to move everyone at the same time from a nursing home into the community? Why? Why not?
2. Do you have to be a rocket scientist with a Ph.D. to get people out of institutions/nursing homes? What skills do you need?
3. According to Bob, why don’t people just wake up one day and say, “I want to move out of the nursing home?”
4. Why is inviting people to participate in community activities, before moving out, important?
5. Why is a peer support network important for people coming out of institutions/nursing homes?

SESSION ELEVEN: The Myth: Nursing Homes Are Safe, Communities Are Dangerous

As Bob Kafka and Mike Oxford have noted, some professionals, as well as many people with disabilities and their family members, believe that people receive better “care” and are safer in a nursing home than in the community. Is this really true? Listen to what Mike Oxford says about the myth that nursing homes are safer.

Play the audio clip: “Nursing Homes = Safe?” (2 minutes). When finished, proceed to the exercises below.

Application and Discussion

1. How safe are nursing homes?
2. What are some things that push people into institutions/nursing homes?
3. Do you know people who had to go into an institution/nursing home, but didn’t want to? What pushed them into an institution/nursing home?
4. Are families always happy to have their spouse/child/relative move out of a nursing home? Why? Why not?

SESSION TWELVE: Low Cost Resources

In the audio both Bob and Mike are very frank about the fact that it requires a lot of resources to get even one person out of a nursing home. The CIL also has to be prepared to help consumers deal with sticky and complicated situations, such as family members who may be overprotective or who have their own reasons for not wanting to have the person at home. This may involve the court system in cases where guardianship or divorce is an issue.

In addition, helping a person to make the successful transition from life in a nursing home to life in the community involves a continued commitment of resources after the person has moved out of the institution. Mike estimates that an average of 90 days or 3 months of intensive support (involving staff time and other resources) are required after the consumer has moved into the community. Some people will take more time and others less, but it is always important to look for the right time to withdraw intensive support. Withdrawal may seem to some like abandonment and it is just as important to prepare people for it as it is for actually moving out of a nursing home.

Topeka Independent Living Resource Center, Inc. has been successful in identifying sources of support that do not cost them a lot of money.

Listen to Mike as he describes some of the creative approaches he has used to obtain housing and furnishings for people whom his center has helped move out of nursing homes. Notice also, at the end of the audio section, that he talks about some handouts produced by the Topeka Independent Living Resource Center: the “Going Home” brochure and the “Move Out/Freedom Plan,” which includes a checklist of the items an individual needs in order to move into the community. These materials are available at http://www.tilrc.org/.

Play the audio clip: “Low Cost Resources” (5 minutes). When finished, proceed to the exercises below.

Application and Discussion

1. Discuss the concept of “over-medicalization.” Have you seen examples of this?
2. What is “ageism”? Does this affect the number of people going into nursing homes?
3. Is it important to invite people living in nursing homes to community activities? What is the potential problem?
4. On the average, how long will centers for independent living or other organization need to provide intensive emotional and physical support to someone who has moved out of an institution/nursing home?

SESSION THIRTEEN: Issues for Advocacy in Consumer Direction and Community Living: Part I

In sessions thirteen and fourteen, four issues are considered that affect policy around consumer direction and transition to community living. Of the four issues, two are discussed in this session:

1. Stereotypes or assumptions related to the age of the consumer
2. Controversy around paying family members as assistants

References to articles on recent research are cited below to provide additional information to those who wish to delve more deeply into the current state of knowledge about these important issues.

Assumptions Related to the Age of the Consumer

Some people question whether consumer direction and community transition are appropriate for and desired by people who are older. The preferences and experiences of those over age 65 may seem to differ in important ways from those of younger persons with disabilities. For example, seniors may be more accustomed to services arranged by “case” managers and delivered by medically oriented home “care” agencies. People who are older may have more unstable medical conditions and thus may need more professional monitoring in the community than is true for younger persons with disabilities. Historically, the focus of support services for older people has been to maintain current levels of functioning and to slow inevitable decline. In contrast, the focus of support services for younger people with disabilities has been on home-based services not as an end in themselves but as a means to a better life. For them, quality of life has been defined not solely in terms of maintenance at home but of education, employment, recreation, and other activity outside the home. Younger persons with disabilities have been perceived as more grounded in “independent living” ideals and as having stronger preferences for directing their own lives. However, as longevity increases, these differences are gradually diminishing and support services for seniors are beginning to also focus on activities outside the home and improving the quality of life. Research shows that consumer direction is appropriate for and desired by persons across age and functional abilities, for both people who are older and their younger counterparts.

• The preference for self direction among older persons is similar to younger persons when choices involve daily living, personal assistance, what is done, and when, how and who does it.
• Older participants may need more outside support in getting started and making consumer direction and transition to the community work.
• Persons who are older are more likely to prefer hiring family members as support workers.

Controversy around Family Members as Assistants

Federal Medicaid regulations prohibit federal payment to “legally responsible” family members such as spouses or parents of minor children. Some states allow payment to parents as assistants to adult children and payments to adult children as assistants to older parents and some states allow certain other family members to be paid with other public (non-Medicaid) funds. Advocates of hiring family members argue that consumers must recruit their own workers and should not be limited in whom they may hire; in a tight labor market consumers need maximum latitude to recruit help. From a practical standpoint, family members represent a large pool of helpers for persons with disabilities.

Using public funds to pay family members for services to their relatives is a highly controversial issue. Taking care of family members is generally seen as fulfilling a moral duty. Critics worry that public payment weakens the moral bonds that support family commitments. Critics (often state officials) also suggest that the opportunity is great for fraud and abuse by families, and that paying family members would require more administrative monitoring, thus would increase costs. Critics worry that costs will explode if the availability of public payment persuades large numbers of family members, now providing services out of moral duty, to demand payment instead. This is called the woodwork effect (as in “coming out of the woodwork”).

Debate about paying family members is further complicated by the argument from some disability advocates that family members should be the last choice in hiring, since familial ties complicate what should be an employer-employee relationship between consumers and workers.

While there is relatively little research on payments to family members, the following studies give some interesting information:

• In one study, about one in five paid family providers had not been providing unpaid services to the recipient prior to hiring, so the pool of available help expanded as a result of allowing payment to families.
• The same study found that certain outcomes (including a feeling of safety and choice) are more positive for consumers when the provider is a family member.
• The Cash and Counseling Demonstration (where consumers select their workers) found little fraud and abuse in either family or non-family provider arrangements.
• Few if any systematic data exist to compare abuse of consumers or program funds in agency “care”, services by consumer-hired non-relatives, and paid family arrangements.

Application and Discussion

Select one of the two issues for advocacy discussed in this session and consider the questions below on your selected topic.

1. Stereotypes about Consumer Direction, Community Living and the Age of the Consumer

a. Do you know a person who is older who needs personal assistance at home? What are your assumptions about that person’s desire and ability to be self-directed?
b. Does that person have a family member(s) involved with “caregiving”? Consider the differences in the desires and needs of older persons compared with younger adults who need personal assistance.

2. Paying Family Members

a. Do you think that the ability to pay a family member would encourage more people to become personal attendants? Why?
b. What do you think about public officials’ concerns that if family members were paid, many who now provide support at no cost would expect to be paid, and the government costs for “care” would “skyrocket”? Do you think this is a realistic concern?

REFERENCES

1. The two issues for advocacy that are addressed in this session and the third advocacy issue addressed in the next session are discussed at greater length in A.E. Benjamin (2001) “Consumer directed services at home: A new model for persons with disabilities,” Health Affairs: 20:6. The fourth issue on nursing and addressed specifically in the next session is discussed in Smith, G. et. al. (2000), A Medicaid Primer. George Washington University: Center for Health Policy Research.
2. Simon-Rusinowitz, L., et. al. (1997) “Determining consumer preferences for a cash option: Arkansas survey results,” Health Care Financing Review: 73-96.
3. Miller, N. (1997) “Patient-centered long term care,” Health care financing review: 1-10 and Eustis, N.N. and Fischer, L.R. (1992). “Common needs, different solutions? Younger and older homecare clients,” Generations: 17-23.
4. Benjamin, A.E. and Matthias, R.E. (2001) “Age, consumer direction and outcomes of supportive services at home,” Gerontologist: 1-11.
5. Benjamin, A.E., et. al. (1999) “Consumer direction and in-home services: Recipient perspectives on family and non-family service provision,” Journal of Rehabilitation Administration: 233-247; and Benjamin, A.E., Matthias, R.E., and Franke, T.M. (2000) “Comparing consumer directed and agency models for providing supportive services at home.” Health Services Research: 351-366.
6. Benjamin, A.E. and Mathias, R.E. (2001) “Age, consumer direction and outcome of supportive services at home,” Gerontologist: 1-11.
7. Benjamin, A.E. et. al. (1991). “Consumer direction and in-home services.”
8. Mahoney, K.J., Simone, K., and Simon-Rusinowitz, L. (2000). “Early lessons from the cash and counseling demonstration and evaluation,” Generations: 41-46.
9. Blaser, C.J. (1998) “The case against paid family caregivers: Ethical and practical issues,” Generations: 65-69.

SESSION FOURTEEN: Issues for Advocacy in Consumer Direction and Community Living: Part II

In this session, the class will continue the discussion on advocacy issues that are important for understanding consumer direction and community living. The issues to be discussed in this session are:

1. Assuring quality in home-based services
2. Performance of skilled nursing tasks

Deciding What Quality Is

Quality can mean many things. From a consumer perspective, quality is fairly simple. You don’t need a professional licensing agency to tell you what quality is. If you are the one who receives personal assistance, quality means:

• Does the worker do what you want, when you want it, and how you like it done?
• Is the worker respectful to you?

Advocates of consumer direction argue that uniform professional standards have only limited relevance to how people judge the quality of their support services and relationships with their workers. In this view, professional oversight may be unnecessary for services that are intimate and personal and only minimally medical or technical. Where personal services in the home are involved, values and preferences will vary about what are essentially “quality-of-life” issues, such as what is appropriate, adequate, comfortable, and secure. In this case the person to whom s e r v i c e s are provided can reasonably judge adequate performance.

A few studies have looked at quality in home-based services. A small number of studies suggest that the actual risks to consumers associated with self direction seem no greater than those with agency-based services.

• A study of older Medicaid recipients in three states found a strong recipients’ satisfaction with personal assistance services.
• A small study of younger recipients of consumer directed services in Virginia found that they reported higher satisfaction and greater work productivity than those receiving agency or informal services.
• In a federally funded study of recipients assigned to agency-delivered versus consumer directed services in California, service outcomes for the self-directing group were no different from those of agency recipients on measures of safety and unmet needs and more positive on measures of service satisfaction and quality of life.
• The same study found that home “care” agency workers received less service training than expected, while consumer-hired workers received more than predicted, although from diverse and unplanned sources (such as from a family physician or a home health nurse).

Performance of Skilled Nursing Tasks

A central assumption of consumer direction is that most personal assistance is not medical. Yet medically related procedures such as assistance with medications, injections, catheters, and ventilators are part of daily life for many persons with disabilities. Assuring the adequate oversight of medically related services delivered at home remains a challenge. States have adopted nursing practice laws that define nursing tasks and prohibit non-licensed persons from performing them.

Although consumer directed services reject the medical model, state laws and regulations about the performance of “skilled nursing tasks” make avoiding a medical model difficult. Federal Medicaid policy does not dictate who must perform skilled nursing tasks, only that such tasks must be performed in compliance with applicable state laws. But state laws and regulations often dictate that such tasks be performed by or closely supervised by a licensed nurse—thereby creating barriers to consumer direction. Liability concerns sometimes also stand in the way of promoting consumer directed service models.
A 1999 HCFA State Medicaid Manual transmittal specifically states:

“Services such as those delegated by nurses or physicians to personal care attendants may be provided so long as the delegation is in keeping with state law or regulation and the services fit within the personal care services benefit covered under a state’s plan. Services such as assistance with medications would be allowed if they are permissible in states’ Nurse Practice Acts, although states need to ensure that the personal care assistant is properly trained to provide medication administration and/or management.”

Most states restrict performance of medical or “paramedical” tasks to licensed medical professionals, although most physician and nurse licensing laws do permit individuals to be trained to perform skilled services for themselves or for close family members. Federal Medicaid law references state licensing laws by requiring that state Medicaid plans comply with all “applicable” state and local statutes. Under the Nurse Practice Acts in most states, tasks such as catheterization, injections, and administering medications are considered invasive procedures, which may be performed only by paid personnel who are registered nurses or persons supervised by registered nurses. In a 1997 Medicaid conference they identified two alternative approaches that several states use in addressing non-licensed persons performing “nursing tasks”. The two models are Delegation and Exemption.

Delegation

Registered nurses (RNs) may delegate “nursing” tasks to individuals they train and supervise. Accountability for delegated tasks remains with the RN. Some Nurse Practice Acts hold nurses strictly accountable for any negative outcomes of tasks performed by their delegates. If the worker to whom a task was delegated negligently harms the consumer, the RN would be liable only if it were established that his or her assessment, training, supervision, or other aspect of the delegating process were performed negligently. Most Nurse Practice Acts do not differentiate between delegation in an inpatient setting, such as a hospital or nursing homes as contrasted with nurse delegation in a home “care” setting.

Exemption

The exemption alternative provides a way to deal with liability concerns. The primary difference between specific delegation and exemption is where the authority and responsibility lie. In an exemption approach, it is the implicit right of the person needing a service to manage provision of a service, as he or she prefers, as long as the provider of service falls within the exempt category. Nurses are not held responsible for provision of the service, but they may continue to play an important role in educating the provider and the consumer of the service—as well as, in some instances, monitoring the service over time. Several states have dealt with the delegation issue by providing specific “exemptions” in their Nurse Practice Acts for consumer-hired personal attendants in Medicaid funded programs. (Most, if not all, states exempt family members.) This approach not only protects nurses, who may assist in training consumer-hired aides without assuming liability for the aides’ subsequent actions; it also protects the state against liability for any harm that might be caused by consumer directed aides.

Application and Discussion

Select one of the two Issues for Advocacy addressed in this session and respond to the questions below on your selected topic.

1. Assuring Quality in Consumer directed Services

a. Do you know of instances where individuals with disabilities were abused or neglected by their paid attendants? Did this occur at home or in a nursing facility?
b. Consider the research finding that “home care agency workers received less service training than expected, while consumer-hired workers received more than predicted, although from diverse and unplanned sources.”

2. Performance of Skilled Nursing Tasks

a. Consider specific examples of routine services that individuals with disabilities might require that must be performed by a licensed nurse.
b. What are the risks to the person with the disability in having someone without the proper skill perform the task?
c. Does a person with disability have the right to take the risk for him/herself?

2. Research to see if your state allows Delegation or uses Exemption for individuals with disabilities to receive services covered by the Nurse Practices Act. What are the implications of either approach for the individual who needs the services?

REFERENCES

10. Doty, P., Kasper, J., and Litvak, S. (1996) “Consumer directed models of personal care: Lessons from Medicaid,” Milbank Quarterly 74: 3: 377-409.
11. Beatty, P.W. (1998) “Personal assistance for people with physical disabilities: Consumer direction and satisfaction with services,” Archives of physical medicine and rehabilitation: 674-677.
12. Benjamin, A.E., et al. “Comparing consumer directed and agency models.”
13. Benjamin, A.E., et al. “Comparing consumer directed and agency models.”
14. Smith, G. O’Keeffe, J., Carpenter, L., Doty, P., Kennedy, G., Burwell, B., Mollica, R. and Williams, L. (2000) A Medicaid Primer. George Washington University, Center for Health Policy Research.

SESSION FIFTEEN: Summary and Preview of Course Three

You heard the definition of consumer direction from Suzanne Crisp and listened to helpful comments from Bob Kafka and Mike Oxford about the area where consumer direction and community living converge. They spoke about building an infrastructure within the community in order to ensure that people have the supports they need when they are living in the community and directing their services. Participants also heard from Tony Records about what transpired during a day of observation at a nursing home and looked at some of the myths of nursing homes versus what nursing homes are really like.

Consumer Direction

You were exposed to the important principles of consumer direction, self-determination, and consumer control. In each of these concepts, persons with disabilities take control of what happens in their lives by making their own decisions. Consumer directed approaches were compared with professionally managed services and supports were identified to help consumers who want to direct their own services. The responsibilities of consumer direction were discussed. Suzanne Crisp presented these important concepts.

Community Living

Participants examined important considerations about either helping people get out or stay out of nursing homes. The class also gained some understanding of the infrastructure of necessary supports such as housing, financial security/benefits, community access, and PAS in the community so people with disabilities can live independently outside of institutions. Mike Oxford talked about these supports and gave ideas on how to obtain them. The class discussed some barriers such as changes, responsibilities, and risks that may prevent people from leaving nursing homes and listened to Bob Kafka and Mike Oxford discuss strategies to overcome the barriers. For more information go to the Topeka Independent Living Resource Center website at: http://www.tilrc.org/.

Advocacy for Consumer Direction and Community Living

Four important advocacy issues were discussed that should be understood by anyone becoming involved in advocating for increased consumer direction and community transition. These issues are: 1) stereotypes and assumptions about the consumer’s age, 2) controversy about paying family members as attendants, 3) assuring quality in home and community services and 4) authority to perform some types of services considered skilled.

At the end of the audio clip “Low Cost Resources,” Mike talked about some handouts produced by the Topeka Independent Living Resource Center: the “Going Home” brochure and the “Move Out/Freedom Plan,” which include a checklist of the items an individual needs in order to move into the community. These materials are available online:

Going Home brochure: http://www.tilrc.org/docs/advocates02.htm.
Move Out/Freedom Plan, including checklist: http://www.tilrc.org.

Summary Application

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 be set up in the community? What obstacles or barriers do you foresee that an individual with a disability may need to address and overcome to move into the community?

Course Three: Medicaid Framework discusses how the state Medicaid program is implemented and its potential to provide essential health care and supports needed by people with disabilities. In Course Three, we will look at Medicaid to help you gain better insight into additional supports that may be available.

Medicaid Framework

Finally in Medicaid Framework, you will read about and listen to Lee Bezanson and Allan Bergman explain the basics of Medicaid and the state waivers that can be obtained through Medicaid. The Medicaid program is extremely important to understand to learn how to obtain services and supports to help people live independently in the community.