[The following paper is the contents from a publication funded by the Administration on Developmental Disabilities
and distributed by the AAMR.  We are making it available on the web to encourage dissemination as widely as possible.



A Consumer's Guide to Quality Community Services

Shaping Our Destiny

For people with developmental disabilities and their families


A project funded by the


Administration on Developmental Disabilities

Washington, DC

©1998 by the American Association on Mental Retardation

Printed in the United States of America

Published by

American Association on Mental Retardation

444 North Capitol Street, NW, Suite 846, Washington, DC 20001-1512

This booklet and the companion guide for providers were both prepared with funds from the Administration on Developmental Disabilities in the Administration on Children and Families in the Department of Health and Human Services, Federal Grant Number 90DN0031.

You can access this document from AAMR's web page at (http://www.AAMR.org). AAMR encourages interested individuals to download and make use of this document. When doing so you must credit the American Association on Mental Retardation, the Administration on Developmental Disabilities, and grant number 90DN0031.

None of the organizations listed or mentioned in this booklet had editorial control over the content. Viewpoints expressed do not necessarily represent those of the committee or participating organizations.

Library of Congress Cataloging-in-Publication Data

Shaping our destiny : a consumer's guide to quality community services for people with developmental disabilities and their families.

p. cm.
ISBN 0940898543 (pbk.)
1. Developmentally disabled--Services for--United States--Evaluation. 2. Consumer satisfaction--United States. I. American Association on Mental Retardation.

HV 3006.A4862 1998





Project Steering Committee


Patricia Laird, Project Officer
Administration on Developmental Disabilities

Sue Swenson
Project Director

Edward Burke
Consortium of Developmental
Disabilities Councils

Doreen Croser
American Association
on Mental Retardation

Curt Decker
National Association of Protection
and Advocacy Systems

William Jones
American Association of University Affiliated Programs
for Persons with Developmental Disabilities

Peter Kinzler
Voice of the Retarded

Polly Spare
Voice of the Retarded

Susan Ames Zierman
National Association of
Developmental Disabilities Councils

The Steering Committee wishes to thank everyone who contributed to the process of producing this book through meetings, reviews, and by sharing their valuable knowledge, experience, and viewpoints.


    "The American people deserve a government that treats them like customers. Government must be accessible to those it serves and to those who pay its bills.

    It must be responsive to [their] concerns.

    It must be run efficiently and well with respect for the tax dollars on which it depends. It must pay its way and live within its means."

        President Bill Clinton, 1995


Americans Expect Quality Services

All Americans depend on services provided by the government--services like mail, social security, public health and public safety, medical research, and transportation. As citizens, we expect good services. As taxpayers, we expect good value. We want our government to work better and cost less. Government services are working to do just that.

The National Performance Review is the federal government's "reinvention" project. It is designed to make government work better and cost less. Beginning in 1993, the National Performance Review asked Americans what we expect from government services. Citizens across the country said:

"Ask us what we want."
"Don't tell us, `That's not my department.'"
"Treat us with courtesy, respect, and enthusiasm."
"Make it easy."
"Provide reliable, timely help."

Do you think services for people with developmental disabilities and their families meet these expectations? This booklet introduces some ideas and resources you can use to help improve the services or supports you rely on.




Americans With Developmental Disabilities Want Quality, Too

Americans with developmental disabilities expect quality, too. People with developmental disabilities and their families--people like you--must often rely on government services--which we'll call supports every day to be able to live their lives.

Reasonable supports can give citizens with developmental disabilities an equal opportunity to participate in American life. People have said they want:

  • human rights, civil rights, and dignity
  • personal responsibility and self-determination
  • equal access to supports, no matter where they live
  • access to competent medical and dental care
  • access to supports that help you participate, learn, work, and contribute as much as possible
  • a community that is safe and caring
  • independence, productivity, integration, and inclusion choice


Supports Should Meet Your Individual Needs

Quality supports meet your individual needs. Everybody is an individual. You or your family may have the same disability label as another person. Your disabilities may be as severe as someone else's. Your families may be similar. Even so, you might need and want very different supports. Your wants and needs may differ for many reasons:

  • Your skills, strengths, values, likes, or dislikes may be different.
  • Your family structure, social networks, or culture may be different.
  • Your personal, family, or community resources may be different.
  • Accessibility of your house, neighborhood, school, job, recreation, or transportation may be different.



Meeting Individual Needs Doesn't
Have to Be Expensive

Equal access does not mean equal service. One size-fits-all rules and red tape are not fair, efficient, or cost-effective. On the other hand, expensive services are not necessarily higher quality. Quality doesn't need to cost more. In fact, demonstration projects have shown that when people and their families choose and control their own supports, costs can be reduced by up to 15 percent. Services can meet your individual needs better and cost less at the same time.




You Can Help Build Quality Systems

Quality requires leadership, planning, data collection, and time. It requires strong partnerships among funders, policymakers, regulators, providers, managers, staff, and especially consumers--people with disabilities and their families.

The quality movement means systems, agencies, and providers are listening to consumers more than ever before.

You can help systems improve (if you are a good consumer) by doing the five things listed below:

  1. Speak up.
  2. Be honest about what you need and want.
  3. Have high expectations for yourself, your supports, your family, and your community.
  4. Be responsible: Help think of cost-effective ways to improve your supports and contribute to your community.
  5. Be fair: Tell providers what you care about so they can focus on what really matters to you.

Here are some things you can do to ensure that your voice is heard:

  1. Participate in a focus group.
  2. Answer a phone or mail survey.
  3. Offer to train staff about your needs and wants.
  4. Form or join a consumer advisory, support, or advocacy group.
  5. Call or write letters to keep support providers aware of your needs on an ongoing basis.
  6. Call or write letters or meet with policymakers.
  7. Volunteer to be a "stakeholder" in quality improvement projects in your state, region, county or provider association.
  8. Use the program's grievance procedure when you are dissatisfied with the quality of a service you received.

People sometimes hold back because they don't want to speak on behalf of others . . . just make it clear that you are speaking only for yourself.

Some people fear retaliation if they speak up. This should not happen. Ask an advocate for help if you are afraid.

Many people need a bit of help telling others how to improve things. Feel free to ask for the help you need.

If you want to know what other consumers think, it is okay to ask the organization to collect and share information on what others say they want.

These are just some examples of supports you might need:

  • accessible locations
  • advance notice of meetings
  • better starting times for meetings (especially if you use accessible transportation or personal assistance services in the morning)
  • alternative formats for documents, such as
    • easy-to-follow text
    • materials on disk
    • large print or Braille
  • interpretation in meetings, such as
    • sign language
    • your native language
  • assistance during meetings, such as
    • support to help you understand what is being said
    • personal assistance or personal care
  • transportation assistance, such as fare or mileage reimbursement
  • respite care for a family member during meetings



Service Standards Are Based on Consumers' Expectations

For decades, bureaucratic compliance standards have outlined minimum requirements for running a licensed support program. Compliance standards are based on regulations and red tape. Quality service standards are not based on regulations and red tape.

Quality service standards are based on consumers' realistic service expectations. Here's how it works:

Step 1) Ask consumers what they want.

To start with, quality service providers ask you what supports you need and how you want them provided. They work hard to understand what is important to you and what trade-offs you are willing to make. (Remember, quality doesn't mean you get everything you want!)

Step 2) Figure out how to do it.

Then experts, regulators, advocates, staff, and other partners can work with you to help figure out how to change the system so the services can meet your needs. Sometimes, regulations and red tape are changed so services can be more flexible.

Step 3) Tell consumers what to expect.

As a consumer, you would then be given some promises about how services and supports should be provided. Those promises are "service standards." Quality organizations always publish their service standards, and they should be available in your native language or the alternative format you request. They help you have clear and reasonable expectations.

Service standards are not just about what services or supports you get. They are about how you get your supports. Some examples of service standards are:

  • "We will ask each person when and where they prefer planning meetings to be held."
  • "Staff who come to your home will be on time 98% of the time."
  • "When you call with a question, we will get you the information you need within 24 hours."
  • "We will treat you, our consumer, with respect, courtesy, and enthusiasm."

You might want to give yourself some time to think about what service standards would be most important to you.



Feedback Helps Systems Improve

Healthy organizations thrive on consumer feedback about their services. Feedback shows what's important, what's working, and what needs changing. Feedback helps organizations improve. Organizations are asking for feedback when they ask you:

  • "How do you feel about your services?"
  • "Do you think your services meet the service standards?"
  • "Do the services meet your expectations? Why or why not?"

Quality service systems always have feedback and complaint systems that are easy to use. They could be a message system for phoning in complaints or concerns, an address to write to, a contact person, or even a suggestion box. Any system must be flexible enough to accommodate people with disabilities, including people who may not be able to put their complaint in writing.

Ask your agency about your complaint or feedback system. If there is no easy-to-use complaint system, your service system has not yet become a quality system.



What If There is No Complaint System?

You can share your ideas and complaints informally, while you are waiting for a complaint system to be put in place. You can even complain that there is no complaint system. Send complaints or feedback directly to the organization involved, such as:

  • your community service provider
  • your local/county agency or area board
  • the state or federal agency that directs, regulates, or pays for the service

Keep it simple. One clear comment is more useful than a list of everything that bothers you. A short note is more useful than a long letter. You don't need to blame anybody, or figure out what caused the problem. Just say what you think.

If you expect follow-up, say so. Add your name and phone number, and keep a copy. For example, people with developmental disabilities and their families have said:

  • "I feel like I'm getting the runaround from department to department. It feels like staff is not able or willing to give me an answer."
  • "I waited eight months for an answer about a ramp for my son. That's too long."
  • "I do not feel my case manager treats me with courtesy or respect."
  • "I need more information about my brother. If I don't know what's going on, I worry."
  • "You say plans will be timely. We waited six weeks for a planning meeting and then only half the people came."
  • "My personal care assistant arrives 15 minutes late every Thursday, so I'm late for work."
  • "I feel that you don't value my time. I waited in the office for three hours. That's too long."

The whole idea is to tell the organization about things that really matter to you.

If your complaint involves how the system works in general, you can talk to the staff of your Developmental Disabilities Council or University Affiliated Program. They may have a project to track what people say about the system. Remember, though, they can only recommend changes, not make them happen. If your concern involves a situation that is truly dangerous, don't use the complaint system. Call your Protection and Advocacy agency immediately.



What If You Don't Want to Complain?

What if you don't want to cause trouble?

Some people don't like to complain if it means getting themselves or others in trouble. But quality systems don't blame consumers or employees for problems. Instead, they try to figure out how to prevent a problem from happening again.

What if you're just not sure what happened? Sometimes, people don't complain because they worry, "What if I have some of the facts wrong?" But you can't be wrong about your own perceptions. Quality systems deal with misunderstandings and concerns without blaming the consumer.

What if you're afraid to complain?

Sometimes, people with developmental disabilities and their families don't want to complain because they think their services will get worse. If you think somebody will hold a complaint against you or your family, it's a good idea to call an advocacy organization, system ombudsman, or legal aid representative to talk over your concerns. You have a right to feel safe expressing your opinion.

What if you can't get services? Are you "not really a consumer?"

Quality management means public agencies must understand the needs of the people they are serving and the people they should be serving. If you can't get the help or services you need, agencies need to hear from you. For example, agencies need to listen to people who say, "We need help now. My daughter has been on the waiting list for 10 years. She's still number 3,700!" or, "I'm getting too old to take care of my son at home. I need help now. Sometimes I forget his pills. I'm afraid to die. What will happen to him?"




No Complaints?

Positive feedback helps, too. A sincere "thank-you" or compliment can be a powerful tool for change. If a service is important to you, or if you like your supports, say so. Then the organization can build on its strengths. People with developmental disabilities and their families have said:

  • "I like the voice mail at your office. You returned my call in 45 minutes. I like the 800 number for concerns, too."
  • "Your newsletter gave me some ideas to improve my supports. It was a good idea to ask me what information I want."
  • "I'm glad you got help for me to read my plan. For once, I felt like it was my life we were talking about."
  • "The flexibility of the voucher program helps me use fewer public dollars for my son's supports. As a taxpayer, that is very important to me."
  • "I'm pleased with the plan you used to identify my daughter's support needs. It was clear and easy to follow. You showed respect for her personality and desires, and for our family's strengths."


Next Steps

Clear service standards and an easy-to-use complaint system are the first steps to quality community services for people with developmental disabilities and their families. This booklet includes a "checklist" to help you evaluate the quality of your own services and supports. The checklist might help you see what steps you would like to take next. Even if your services and supports score very high on the checklist, please remember:Quality improvement is a process that never ends. Working together, we can always find ways to do things better, or faster, or at less cost, or for more people.



Want More Information?

If you are interested in more information on government programs to improve service quality, your local library can help you find information on the National Performance Review. While you are at the library, you may wish to check out the National Performance Review web site at www.npr.gov. This site links to many other resources. All legislation, including the Government Performance and Results Act of 1993 may be found by going to THOMAS on the Library of Congress web site at www.loc.gov.


National Resources on Developmental Disabilities

If you would like to know how you can work with providers, policymakers, advocates, funders, and regulators to improve systems and service quality in your state, you may wish to call one of these organizations in your state:

  • Developmental Disabilities Council
  • Protection and Advocacy Agency
  • University Affiliated Program

Each of these organizations is dedicated to improving the independence, productivity and community integration of people with developmental disabilities. They help systems listen to people with developmental disabilities and their families. You may call on any of them for help.

If you can't find them in the phone book, you can call the national association offices listed on the next page for the correct name, address, and phone number of your state's programs.

Administration on Developmental Disabilities (ADD), in the Administration on Children and Families, U.S. Department of Health and Human Services:

(202) 690-6590 (voice)
Web site: http://www.acf.dhhs.gov

American Association of University Affiliated Programs (AAUAP):

(301) 588-8252 (voice)
(301) 588-3319 (TDD)
Web site: http://www.AAUAP.org

Consortium of Citizens with Developmental Disabilities Councils (CDDC):

(703) 780-1225
Web site: http://www.cddc.com

National Association of Developmental Disabilities Councils (NADDC):

(202) 347-1234
Web site: http://www.igc.apc.org/NADDC

National Association of Protection and Advocacy Systems (NAPAS):

(202) 408-9514 (voice)
(202) 408-9521 (TDD)
Web site: http://www.protectionandadvocacy.com



Do You Have Quality Services?

Check if your answer is "Yes."

_____ 1) Do you feel you are treated with courtesy, respect, and enthusiasm?

_____ 2) Do staff members ask you what you want?

_____ 3) Do staff members make it easy for you to work with them?

_____ 4) Do people try to help even if it is not their department?

_____ 5) Can you get help in time to avoid a crisis?

_____ 6) Do you feel that you can rely on your services and providers?

_____ 7) Is there a complaint system, and is it easy to use?

_____ 8) Are you asked whether your supports are working okay?

_____ 9) Are you asked if your needs are changing?

_____ 10) Is the information you need easy to find and understand?

_____ 11) Is it easy to tell if you're eligible for service?

_____ 12) Can you get help if you need it while you're on a waiting list for a service?

_____ 13) Is it easy to change your services?

_____ 14) Can you choose how you get your services?

_____ 15) Can you turn down services you don't value ?

_____ 16) Do organizations that serve you tell you their service standards in writing?

_____ 17) Can you get information and data to help you compare services?

_____ 18) Would you choose these services or supports for yourself?

_____ 19) Is alternative dispute resolution such as mediation available to you?

_____ 20) Do you know who to call if you suspect abuse or neglect?

"Yes" answers show commitment to quality. As service quality improves, your total number of "yes" answers will increase.

This checklist might not include some of the things that are important to you. Likewise, some of these questions may not be important to you at all. Think about what is important to you, and make a list of these things.


[end of document]

Copyright ©1999 American Association on Mental Retardation.  All Rights Reserved Worldwide.