Library of Congress Cataloging-in-Publication Data

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

Do the services and supports you provide meet your consumers' expectations? Are they quality services? This booklet introduces some ideas and resources you can use to begin to ensure that they do.

Quality management-often called "managing for results"-requires focus, commitment, and work throughout an organization. To get beyond the old
habits of working toward "minimum acceptable" compliance standards, organizations must pay attention to:

• leadership
• strategic planning
• data, information and analysis
• human resource development
• customer and market focus
• process management
• key performance results

Organizations manage for results to ensure that they accomplish what they were designed to accomplish - because organizations that achieve their
intended results are sustainable. Results can be managed so that the provider is accountable to consumers, families, and funding entities.

Private human service providers, government agencies, and competitive businesses all use the same basic approach to managing for results.

Cost is not a good measurement of quality. Costly services are not necessarily quality services. Quality improvements don't necessarily
require more funding. Meeting individual needs-providing just what people need and want-can make services more efficient and effective. In fact,
studies indicate services and supports cost less when they are flexible-when people with developmental disabilities and their families are
empowered to choose and control their own supports.

No matter where people live or where they get their supports, and no matter how long they have used services, Americans who have developmental
disabilities should have an equal right to quality services and supports-including clear, relevant service standards, and reliable, timely help. Merely delivering services in the community doesn't make them quality services. Community services are quality services when they are flexible, reliable, and complete enough to meet an individual's needs. Quality community services will make it possible for Americans with developmental
disabilities:

• to be safe and free from abuse or neglect
• to choose how to spend their free time, and with whom
• to be connected to people who care about them-friends, family, and neighbors
• to access decent health care, including dental care

This means that people may choose many different living situations and many different combinations of services and supports.

The systems we have now were not set up to deliver a broad range of individually-designed services-even if providers are committed to doing so.
There are new management tools and information technology that make individual quality achievable.

New service standards help ensure that everybody understands how community services and supports are supposed to work. New service standards help organizations focus on delivering services that are "beyond compliance." Instead of focusing on inputs, they are focusing on results or outcomes
that are meaningful to the people who use the supports. New service standards don't come from the federal government- they come from each
organization's interactions with its customers. It takes time to put them together. Right now, systems across the country are working to:

• Clarify principles of self-determination for individuals.
• Identify and publish service standards.
• Support individual choice.
• Listen to what people with developmental disabilities and their
  families say they want.
• Be flexible enough to give people what they need when they need it.
• Develop data and information management tools to support this
  individual focus.
• Work to integrate all parts of the system.

Quality is not easy. The "system" must have integrated services -from Medicaid and Social Security, to public education, vocational rehabilitation, housing, transportation, and aging. And, the "system" must be integrated through all levels of government-from Congress and federal agencies, to state legislatures and state agencies, counties or regional boards, communities and local providers. Specific examples of a wide range of quality projects include the following:

• The Oregon Developmental Disabilities Council published "A Foundation
  for Quality Assurance of Community Services" in 1997. This booklet lays out
  principles for an evolving system of quality assurance and foresees getting
  all parts of the system to work together. It integrates programs that serve
  people with developmental disabilities with Oregon's statewide "Benchmarks"
  program.
• The Council on Quality and Leadership in Supports for People with
  Developmental Disabilities publishes numerous guides on outcome-based
  performance measures, including new measures published in the Fall of 1997.
  The booklets explain outcome measures that focus on whether a person's
  services and supports are achieving what the person and their family
  want-from early intervention to residential services. The Council's
  publications explain how to listen better to people who have developmental
  disabilities.
• The Monadnock Self-Determination Project in New Hampshire reported data
  on the outcomes achieved when family and friends help a person manage their
  own support budget. In the project, the money is turned over to the team.
  Initial data show that almost all outcomes are much better-and none are
  worse-and costs are 12-15 percent lower than when the government managed
  the budget.
• The Robert Wood Johnson Foundation's Self-Determination Initiative
  published "An Affirmation of Community: A Revolution of Vision and Goals."
  It clarifies the new goals of community supports, and lays out principles
  for systemic action.
• The Human Services Research Institute is working with the National
  Association of State Directors of Developmental Disabilities Services to
  track and evaluate the development of state quality assurance systems
  across the country. These studies will provide benchmarks to improve
  services.
• Many states will share the monitoring reports and program evaluations
  completed by independent and university consultants. These reports explain
  innovative methods used to convey the philosophy of individual supports to
  providers and recipients. They also include descriptions of practical
  problems being encountered in particular states.
• Performance contracting is beginning to provide data on what is working
  and how well it is working in states as well as incentives to improve
  organizational performance.
• Minnesota's Developmental Disabilites Council published "Minnesotans
  Speak Out," a collection of focus group findings concerning perceptions of
  needs.
• Missouri's Developmental Disabilities Council is compiling a "report
  card" containing data on customer evaluations of services and providers.
• Across the country, person-centered planning is helping service systems
  recognize the highly individual needs of people with developmental
  disabilities, and it is helping people and their families recognize their
  own strengths and choices.

Some parts of the system are working to improve how they listen to the individual people who use their services. For example, in early 1997 the Administration on Developmental Disabilities sponsored Family Forums in Florida, Tennessee, and Washington state to listen to parents and family members of people who have developmental disabilities. It was not an easy process. Family members often came to the meetings deeply divided by their histories and beliefs that people get better supports either in institutions or in the community. During the Forums, family members listened to each other and discovered they had a lot of common concerns-no matter where the person they love lived-and they were tired of fighting with each other over issues they could not resolve. Families decided to agree where they could agree, and try to move forward from there. Instead of arguing, people who had seen themselves as "enemies" found themselves ready to work together and respect each other's opinions so that:

• Each person's needs would be met.
• Systems would demonstrate equity.
• Family input would be included in an individual's decision-making process.
• Systems would be driven by the needs and wants of the individuals and families who use the services and supports.
• Litigation would be avoided as much as possible by strengthening alternative dispute resolution approaches such as mediation.
• Consumers and government agencies would both work with providers to help solve problems before they became crises.

Participants made it clear that they had not seen any service standards for community services yet, but that they expected them soon-and not just
Medicaid standards of what should be available, but provider standards describing how services would be delivered. For example, how many hours or days will it take to return a phone call, or to get an answer to a question, or to get a dental appointment.

The Family Forums were a successful way to listen to consumers. State developmental disabilities councils or state departments of human services for people with developmental disabilities might sponsor similar efforts to improve the information and data-gathering processes. In addition "stakeholder" organizations like People First, Self Advocates Becoming Empowered, The Arc/US, United Cerebral Palsy Association, Parent Training and Information Centers, the Voice of the Retarded, family-to-family groups, and family support councils are likely to be interested in helping providers improve the quality of community services.

In addition, individual leaders such as Partners in Policymaking graduates are likely to want to help. To improve your listening skills, consider
these strategies:

1. one-to-one meetings between providers and consumers-get to know people (Don't forget to make participation possible by
   providing transportation and childcare if possible.)
2. focus groups (always have these and other meetings in accessible locations)
3. consumer surveys: mail, phone, or interview (make sure they are accessible)
4. suggestion boxes and feedback forms
5. easy-to-read newsletter articles, or forms asking for consumer input
6. consumer Advisory Councils that have necessary supports and access to consumer satisfaction data
7. "report cards" of how consumers rate programs
8. a written and publicized grievance procedure which provides high-level organizational responsibility for consumer complaints
9. toll-free numbers for complaints and suggestions
10. supports to help people with developmental disabilities give feedback
11. performance evaluations of staff based on how well they get input from consumers-even if the feedback is negative

Your consumers may need supports in order to provide the input you seek. Below are examples of supports consumers might request:

1. focus groups
2. phone or mail surveys
3. consumer or family training for staff about their needs and wants
4. consumer advisory, support, or advocacy groups
5. letters from consumers and families to keep you aware of their needs an ongoing basis
6. phone calls or meetings with consumers and their families
7. quality improvement projects in your state, region, county or provider association
8. a grievance procedure where consumers can register dissatisfaction with the quality of a service you provide

Another resource that's available in most states is a state quality council, which provides low-cost advice and support to a broad range of organizations-including governmental agencies. Any business librarian will be able to help you find your state's council. Many books have been published on reinventing government and the National Performance Review. Check one of the web sites on the Results Act, Managing for Results, or the National Performance Review. These are linked through the National Performance Review site at www.npr.gov.

The responsibility for system integration should belong to the system, not the consumers. In order to deliver quality community services, community providers, county or regional offices, state agencies, and federal agencies need to work together as partners. Blaming each other's rules or performance for failing to deliver or coordinate services accomplishes nothing for people with developmental disabilities or their families. All parties need to find ways to cooperate. They need to find ways to change regulations and red tape that get in the way. You will find many partners eager to help you be a part of the common-sense quality revolution that is
changing the face of government services.

The Developmental Disabilities Act authorizes three programs in every state: a Developmental Disabilities Council, a University Affiliated Program, and a Protection and Advocacy Agency.

Those programs do not provide or fund statewide services to people with developmental disabilities, but they check on whether those services are meeting people's needs. They are probably good sources of information in your state.

All three programs look for ways to build proactive partnerships with people with developmental disabilities, their families and communities, and with the providers who serve them.

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

_____ 1) Do consumers think they are treated with courtesy, respect, and enthusiasm?
_____ 2) Do consumers say they are asked what they want?
_____ 3) Do consumers feel your services are reliable?
_____ 4) Do you measure how well your organization performs against benchmarks for timeliness and reliability?
_____ 5) Do you regularly ask consumers whether their supports are working for them?
_____ 6) Do you track how consumers' needs are changing?
_____ 7) Do you measure whether consumers think information is easy to understand?
_____ 8) Are staff members trained and empowered to make processes easy for your consumers?
_____ 9) Are staff members cross-trained and empowered to solve emerging problems in other "departments?"_____ 10) Do consumers say you have an easy-to-use complaint system?
_____ 11) Do you help potential consumers find out whether they are eligible for services?
_____ 12) Do consumers say it's easy to change their services or providers?
_____ 13) Do consumers feel they have input into how they get their services?
_____ 14) Can consumers turn down services they don't value?
_____ 15) Do you publish your own service standards (beyond legal compliance requirements)?
_____ 16) Do you provide performance data to help consumers compare services?
_____ 17) Do you use alternative dispute resolution- such as mediation-instead of litigation?
_____ 18) Do you publish who consumers and families should call if they suspect abuse or neglect?
_____ 19) Do you share responsibility with partners-i.e., other organizations in the system-to effect system change?
_____ 20) Do you measure key performance results?