Person-Centered Supports — They’re for Everyone



Person-Centered Supports —

They’re

for Everyone!

[pic]

National Association of State Directors

of Developmental Disabilities Services, Inc.

Person-Centered Supports — They’re for Everyone!

December 2000

Prepared as part of the “Reinventing Quality” Project, a three-year project funded by the DHHS Administration on Developmental Disabilities. (Grant No. 90DN0062). The Reinventing Quality Project is a collaborative undertaking of the National Association of State Directors of Developmental Disabilities Services (NASDDDS), The Human Services Research Institute (HSRI), and the Institute on Community Integration at the University of Minnesota (ICI/UM)

©National Association of State Directors

of Developmental Disabilities Services, Inc.

NASDDDS

113 Oronoco Street

Alexandria, VA 22314

Tel: 703-683-4202

Fax: 703-683-8773

Web Site:

Foreword

In October 1999, the National Association of State Directors of Developmental Disabilities Services (NASDDDS), together with the Human Services Research Institute (HSRI) and the University of Minnesota Institute on Community Integration (UM/ICI), was awarded a grant by the federal Administration on Developmental Disabilities (ADD) to evaluate and disseminate information on service delivery and quality assurance approaches that promote flexibility and innovation in publicly-financed services for persons with developmental disabilities. The three-year, $750,000 grant project is entitled “Reinventing Quality: Fostering Promising Practices in Person-Centered Community Services and Quality Assurance for People with Developmental Disabilities.”

During year one of the project, the Reinventing Quality (RQ) project team and steering committee (composed of four individuals with disabilities and four parents of children with disabilities) convened a three day “Consensus Conference” aimed at achieving agreement among the major stakeholders in the developmental disabilities community concerning the essential “principles” and related “markers” (or indicators) of a person-centered public system of consumer-directed, outcome oriented community supports and related quality assurance/improvement methods.

Person-centered services and individually tailored quality management practices have gained broad acceptance in the developmental disabilities field in recent years. Yet, the RQ project team concluded that a clear consensus had not yet emerged regarding the essential elements that define a public service system grounded in the principles of person-centered supports. The “Consensus Conference” was organized in order to help fill this void.

A set of nine principles to guide the operation of a system of quality, person-centered supports was drafted and distributed to the consensus conference participants in advance of the April 13-15, 2000 meeting. Based on the feedback received, the project staff revised the original principles and used them as a framework for organizing the conference. Participants also received background materials that explained the aims and organization of the conference.

To ensure that all major stakeholder groups were represented at the conference, the RQ project team and steering committee agreed to the following categories of attendees: (a) ten self-advocates; (b) ten family members; (c) four direct service workers; (d) four representatives of service provider agencies; (e) six “funders” of service (local, state, and federal officials); (f) four regulators of services (representatives of licensing/certification agency and accrediting bodies); (g) eight advocates/professionals in the MR/DD field; and (h) four services coordinators/case managers.

The bulk of the April 2000 meeting was spent on the development of “markers” or indicators of the presence or absence of the essential principles, elements and features of person-centered public systems of consumer-directed, outcome oriented community supports. The participants were divided into nine work groups, with each group assigned the task of developing markers for one of the guiding principles. During the closing session, the results of the work group’s deliberations were reported and overlapping markers identified.

Following the conference, the NASDDDS project staff disseminated a meeting summary to the conference to participants. Feedback was gathered over the summer months and assimilated into an initial, draft “Consensus Statement.” In August 2000, the draft statement was distributed to participants for final comment and, in October, the final version was posted at the project’s “Quality Mall” Web site ().

The “Consensus Statement” will guide the remaining activities of the Reinventing Quality project – including: (a) the contents of the Quality Mall Web site (an electronic clearinghouse of information on cutting-edge, person-centered service practices and policies; (b) the design of case studies of the service system in four states that have been identified as best practice models of person-centered services; and (c) the programs of two, national Reinventing Quality conferences.

This publication contains the final version of the “Consensus Statement.” The RQ project team hopes that readers find these proposals helpful in pursuing their own efforts to promote individualized consumer-directed, outcome-oriented practices.

Mike Cheek

Project Coordinator

December, 2000

Organization

and Aims

of the

Consensus

Conference

T

he primary goal of the Reinventing Quality project to gather and disseminate information that will facilitate the promotion and expansion of person-centered supports (see appendix for a brief summary of the project’s goals and planned activities). The April 14-15, 2000 Consensus Conference was organized in an effort to lay out the essential characteristics of service systems that reflect person-centered principles. People with developmental disabilities, family members, advocates, service/support agencies, workers, service coordinators, regulators, and funders sometimes have different perspectives on what constitutes a person-centered system of supports and how it should be operated. Reaching consensus about what is important to make services effective and safe is a vital undertaking. The broad overarching principles are an important starting point in developing a consensus. Taken together, the principles outlined in the following section of this report call for building public systems that welcome and embrace diversity in the provision of services and supports person-to-person and family-to-family. The person-centered support framework is the antithesis of the “one size fits all” service models and programs that marked early stages of community services. Everyday lives, individual choice and control, and community membership all are important. Assuring and promoting quality also are very important.

Fundamental principles form the basis of person/family-centered supports. Markers or indicators go a step further to describe the “must haves” if the public system is to bring a particular principle to life. For example, self-determination is an important guiding principle. But, if this principle is to be observed in day-to-day practice within the service delivery system, what are the “must haves” that have to be present?

The Consensus Conference brought together people with different points of view and asked them to develop a comprehensive set of critical markers that indicate the presence or absence of a set of proposed guiding principles. Major stakeholder groups, agreed to by the RQ project team and steering committee, were represented at the conference. The categories of attendees included: (a) ten self-advocates; (b) ten family members; (c) four direct service workers; (d) four representatives of service provider agencies; (e) six “funders” of service (local, state, and federal officials); (f) four regulators of services (representatives of licensing/certification agencies and accrediting bodies); g) eight advocates/professionals in the MR/DD field; and (h) four services coordinators/case managers.

The project staff distributed copies of the draft principles to Consensus Conference participant and asked them to review and select three principles, rank ordering them from most to least interesting. Based on participant responses, the project staff divided participants into nine work groups, one each principle. The work groups were instructed to: (1) make any necessary minor enhancements or revision in the principle statement; and (2) develop markers and explanatory comments to flesh out the principle.

Conference participants were asked to express these markers in straightforward language. They also were asked to identify key concepts that would help to flesh out a marker: “must-haves” about the marker itself. For example, if having a support broker or personal agent is important, it also might be very important that people and families are free to select the person who plays this role, and that individuals who play the role demonstrate certain competencies or skills. Participants, project staff, and steering committee members worked for two days on developing these items and each work group presented its proposals on the last day.

Following the April meeting, the project staff developed a summary, 30+ pages, of the presentations on each principles and related markers. This meeting summary was disseminated to the over 50 meeting participants. Feedback was gathered over the summer months and assimilated into an initial, draft “Consensus Statement.” In August 2000, the draft statement was distributed to participants and the project steering committee for final comments. Based on this final review, the document was reworked a third time and, in October, the final version was posted at the project’s “Quality Mall” Web site ().

The final version of the Consensus Statement, reproduced in its entirety in the next section of this report, contains ten principles and eighteen underlying markers, or indicators, of the presence or absence of such principles. Each marker, in turn, is further clarified by several bulleted statements “fleshing out” the meaning or intent of the marker.

Framing

the

Issues

Introduction

There have been remarkable changes in publicly funded services for people with developmental disabilities over the past twenty-five years. A quarter century ago, large public institutions claimed almost all tax dollars earmarked for these services. Scant services and supports were available for people living in the community. Only a very small proportion of our nation’s citizens with developmental disabilities received any assistance at all. The Education of the Handicapped Act (now referred to as the Individuals with Disabilities Education Act – IDEA) had only recently been enacted.

Today, community services and supports are far more abundant. Ten states have closed all public mental retardation institutions. In most states overwhelming majority of tax dollars earmarked for developmental disability services now are used to purchase community services and the number of individuals and families receiving services in the community is far larger.

However, there are still major problems that need to be addressed. In most states, developmental disabilities service systems cannot ensure that all individuals and families who need and want supports will receive them promptly. Eliminating service waiting lists must be a top priority. Recruiting and retaining community workers is an especially serious problem nationwide. There also are serious concerns about whether individuals are able to access essential health care services.

A major shift has occurred in system goals. In the past, service systems tried to fit people with disabilities into a “continuum of care” regulated according to service “slots.[1]” Individuals and families did not have many choices nor were they empowered to make fundamental decisions about the services they would receive or other important life decisions. Often, services were provided in isolated settings such as state institutions or houses with several individuals living together – away from mainstream community life.

A different vision – person centered supports – started to take hold during the 1980s. Under the principles of person-centered supports, individual and family needs and preferences would occupy center stage. Services and supports would be individually tailored, geared to helping individuals live everyday lives in their communities, including obtaining real jobs alongside people without disabilities, living in regular housing, and enjoying full citizenship. Individuals and families would make the key decisions instead of system managers and provider agencies.

Today, the transition from the old to the “new way of thinking” embodied by person-centered supports is a long way from complete. Family-directed services are more common. More people hold integrated community jobs than ever before. A growing number of people live in a home of their own. But, for many individuals and families, the “old way of business” continues to hold sway.

There are many barriers to completing the transition to the “supports paradigm.” Changing old practices can be very difficult. Outmoded practices must be replaced by new practices and policies. “Talking the talk” often is easier than “walking the walk.” Traditional operating policies of public systems cannot remain in place if individuals with disabilities and their families are to enjoy access to person-centered supports and services.

The lack of consensus regarding the appropriate methods to assuring the quality of person-centered supports is an especially formidable barrier. Regulatory approaches employed with traditional service models are not applicable to new, more individualized service systems. Person-centered supports sometimes are regarded as “too risky” for vulnerable people. There are concerns about the adequacy of available safeguards to prevent neglect, abuse and exploitation of individuals living in the community. Until a consensus is reached concerning the essential features of a quality management system, without deviating from a firm adherence to the principles of person-centered supports, progress toward completing the transition to the “supports paradigm” will be slow.

There are hard questions and issues that have to be addressed in pursuit of promoting and expanding person-centered supports. These issues can be divided into two groups: “system” issues and “quality” issues.

System Issues

There are various system issues that need to be addressed in order to promote and expand person-centered supports. Many of these issues revolve around the problems associated with transitioning to policies and practices compatible with the operation of person-centered support systems. While some issues involve money, others are policies that sometimes prevent handing control over services to individuals and/or their families. These issues include:

How do we make more choices and options available to people with developmental disabilities and families? A big problem is that choices often are limited to the options currently made available by specialized community service agencies. It is hard to go outside the “system.” We tend to think in terms of operating “recreation programs,” instead of looking toward creating opportunities for people to join health clubs or bowling leagues. Sometimes, it appears that systems erect imposing barriers to choice by having rules that only sanction services by certain kinds of recognized service agencies. If we are serious about people having choices and more presence in the community, it seems important that some of these rules change. Among the steps that might be taken are:

• Funders (state and federal) should adopt more flexible policies that allow people’s needs to be met in more creative ways.

• Funders need to change their rules to make it easier for friends, neighbors and family members to be paid when they provide supports.

• States should encourage the development of new agencies.

What steps need to be taken to accelerate the changeover to person-centered planning? Person-centered planning methods are widely regarded as vital to the development of effective person-centered supports. Such methods start with listening to the person and seeking the best strategies to help each individual achieve the objective he or she believes to be important. While the use of such methods is becoming more widespread, there also seem to be challenges to making such methods common practice. Among the steps that have been suggested along these lines include:

• Expanding training in the use of such methods.

• Making it clear in federal and state policy that such methods are not only acceptable but also desirable.

• Doing a better job of underwriting the cost of the additional time associated with developing sound person-centered plans.

How can we make sure that people and families do not need to wait for critical services and supports? Nationwide, the “gap” between services needed and services available is about 15-20 percent. The gap varies significantly from state to state ranging from: very narrow in some states and much wider in others. Where there is a gap, service systems divide people and families into “haves” and “have nots.” Many believe that promoting person and family centered supports is one way to close this gap. Some of the steps that have been suggested to address this question include:

• Make services an entitlement.

• Modify the supports available so that it is not so costly to serve people.

• Change resource allocation rules so that there are positive incentives to save money and redirect the savings to help people and families who are not receiving the supports they need.

What steps are necessary to allow individuals and families who want to manage their own supports to do so? Self-determination is a very powerful idea. It involves people and families making decisions about money as well as how and by whom supports will be provided. Many individuals and family members want to manage and direct their own supports. But, sometimes it seems that there are all kinds of obstacles to self-determination. For example, state and federal policies sometimes stand in the way. Policy makers sometimes express reservations about people managing their own supports. Funding systems do not do a good job in tying dollars to the individual or the family. Some steps that have been suggested to address such barriers include:

• Changing state and federal laws and policies so that they clearly sanction self-determination.

• Developing and adopting funding methods that assign people with disabilities and family members individual budgets.

• Taking positive steps to help individuals and families manage their own supports, including providing them with training and the assistance of support brokers.

How can public systems do a better job of supporting families? Most people with developmental disabilities live with – not away from -- their families. This also is true of many people who have other disabilities. It is important, therefore, that families are supported. Such supports are becoming even more important because a growing number of people with developmental disabilities have “aging caregivers.” Often, however, family support programs offer only very limited assistance to families and families often feel forced to seek a community placement neither they nor the family member with a developmental disability wants. Families frequently complain the supports available do not meet their needs or that they have to arrange their lives around when services might be available. Some steps have been suggested to better support families, including:

• Recognizing that supporting the family often is just as important as supporting the individual.

• Making sure that the resources available to families are sufficient so that they do not need to seek an out-of-home placement out of desperation, including assuring that the amount of support takes into account each family’s unique circumstances.

• Supporting families in directing supports by encouraging them to set up micro boards or enlisting circles of support.

• Enabling and supporting families to come together to pool resources, public and private, to support people with developmental disabilities.

How can we encourage work and other valued activities that promote community integration and a sense of personal worth among people with developmental disabilities? There have been solid efforts to assist people to obtain and maintain regular jobs in the community. Many people with developmental disabilities are supported in volunteer activities where they make important contributions to their communities. But, there remain a large numbers of people who do not have these opportunities. Often, it is the result of the lack of sanction for “unconventional” activities that do not quite fit into existing support and funding categories. Often, it seems simpler to keep doing the same things instead of breaking out of existing “boxes.” Among the ways this problem might be addressed are:

• Making it easier to link people directly into employer worker training programs, rather than relying exclusively on “specialized employment programs.”

• Changing state and federal policies so that it is clear supports can be provided to people who are pursuing all types of opportunities, not just those that fit into narrow categories.

• Assisting service agencies to modify their operations so they are able to offer more varied supports to individuals.

• Not penalizing people who get jobs by eliminating their benefits or making them use the money they earn to pay for services.

Quality Assurance Challenges

Public service systems have other critical responsibilities. These include:

• Assuring that individuals are free from abuse, neglect, and exploitation;

• Protecting the rights of individuals and families;

• Making sure that public dollars are used in accountable manner;

• Assuring that individuals have access to necessary professional services;

• Evaluating the effectiveness of services and supports to determine the extent to which they result in valued outcomes for individuals and families; and,

• Assessing the performance of service providers to ensure that they are adhering to statutory and regulatory requirements and standards.

These responsibilities must be reconciled and integrated with the fundamental precepts of person-centered supports.

Historically state and federal quality assurance and oversight programs have been organized principally around “facility-based” services. They have been geared to determining whether basic health, safety and environmental standards are met and the extent to which the service agency operates in conformity to fixed service standards, including programmatic and staffing requirements. These quality assurance programs have stressed the service agency’s compliance to standards. Programs such as this emerged in the 1970s in response to clear evidence that individuals were at risk of harm and only receiving custodial care rather than treatment services that would assist in improving their functioning.

As person-centered supports have taken hold, it has become more and more evident that quality assurance itself must be reconfigured in light of the “new way of thinking.” For example:

• The Medicaid home and community-based (HCB) waiver program has displaced the ICF/MR program as the principal source of federal and state funding for services to people with developmental disabilities. As a funding stream, the HCB waiver program enables states to offer more diverse services and supports, including embracing the precepts of person-centered supports. However, over the years, there has been enormous tension between the states and the federal government concerning the extent to which the provision of HCB waiver services must comport with ICF/MR standards and practices. States are concerned that venturing too far afield might endanger vital funding for community services. Federal officials are concerned that important needs of individuals might go unaddressed if treatment needs are ignored.

• People with developmental disabilities are encouraged to have a home of their own. They should have the right to pick where and with whom they live. It is frequently said that supports should be available wherever individuals chose to live. However, concerns that the individual might be exposed to “too much risk” if she or he lives on their own frequently results in people not being able to have a home of their own.

• More generally, concerns are expressed that people with developmental disabilities (and families) might make inappropriate choices. This frequently leads to professionals seeking to control and dictate decisions concerning services and supports, often with the result that individual’s and family’s preferences play a secondary role in service and support planning. Concerns about quality and “risk exposure” often lie behind this unsatisfactory result.

• Service agencies frequently are caught in the middle by mixed messages. On the one hand, they are encouraged to adopt person-centered support precepts. On the other hand, they express concerns that straying too far from the “old way of doing business” might cause them to encounter problems with regulators.

Even though the precepts of person-centered supports are widely accepted and acknowledged as enormously important in aligning the provision of services and supports with critical, fundamental goals and values, including integration, independence and choice, there remains considerable uncertainty concerning the best approach to assuring and promoting quality under this framework.

The lack of consensus regarding the interplay between person-centered supports and quality concerns is a serious problem. Achieving consensus entails addressing many key issues along various dimensions. Many suggestions have been offered regarding ways of addressing such issues.

The critical issues and questions that need to be addressed seem to include:

What steps need to be taken to ensure that people with developmental disabilities enjoy personal security while being able to live everyday lives? Group homes and similar living arrangements are perceived to be safer than “unregulated” living arrangements. Many people with developmental disabilities want a home of their own. However, personal security is an issue for them and frequently for their families. It also is a concern in traditional living arrangements. Certain steps often are suggested as a means of promoting personal security. These include:

• Making sure that there are sufficient service coordinators to make sure people are receiving the supports they need and are safe.

• Developing person-by-person personal security plans that address areas of concern in a thoughtful and individualized fashion, including enlisting family members, friends, and neighbors to help address critical areas of concern.

• Establishing “hotlines” so that problems can be reported and responded to quickly.

What steps need to be taken to assure that each person’s support plan is responsive to his or her needs but respectful of the person’s choices? There is broad agreement that furnishing person-centered and family-centered supports begins with using person/family-centered planning methods such planning methods start with listening to the person and the family and identifying goals and strategies for helping attain them. There are a variety of person-centered planning methods. Concerns sometimes are expressed that such methods overlook important issues. There also are concerns that community personnel lack the training to use person-centered planning methods effectively or that the planning process is overly influenced by funder or agency interests. At the same time, there are problems with traditional service planning methods because they are “too deficit based” and sometimes result in overriding individual choices and preferences.

Achieving a proper balance sometimes seems difficult. In this arena, steps that have been suggested include:

• Increased training and education concerning person-centered planning methods for agency personnel and individuals/families;

• Establishing firmer guidelines regarding the topics that must be addressed in service and support plans; and,

• Removing conflicts by shifting to independent service coordination, including making sure that individuals and families are empowered to select a service coordinator or broker of their own choosing.

How should the licensing or certification of service providers be changed to ensure that they are capable of furnishing high quality services but not limit them with unnecessary regulations and requirements? Individuals and agencies that support people with developmental disabilities must have solid skills and demonstrate competency. There should be background investigations of workers to make sure that they are trustworthy. However, often service providers complain that there is a high burden in complying with regulations and requirements that ultimately detracts from their concentrating on supporting persons and families, including achieving key outcomes. Regulations and requirements frequently are characterized as stifling innovation and creativity. Sometimes stiff regulatory requirements also make it more difficult to encourage additional agencies or individuals to furnish services and this leads to individuals and families having fewer choices available to them. Many providers express the view that they should be judged on performance rather than rote compliance with regulations. However, funders and regulators often are leery about transitioning to alternate quality assurance methods. They are concerned that such methods might remove key safeguards. Some steps that have been suggested to address this question include:

• Stripping down regulatory requirements to those that are absolutely essential to ensure health and safety while employing alternate “outcome oriented” methods to gauge provider performance in more person and family-centered terms;

• Building quality requirements directing into individual support strategies in order to spell out a clear set of expectations, person-by-person, instead of relying on traditional licensing and certification programs;

• Reforming regulatory requirements to avoid limiting the sources of supports to recognized specialized developmental disabilities agencies; and,

• Taking into account the experiences that individuals and families have had with service agencies during the certification process.

How can solid and trustworthy information be provided to individuals and families to assist them in making informed choices about possible providers? A key dimension of person-centered supports is that individuals and families exercise choice of the provider or providers that will furnish the supports they need. However, often there is inadequate information available concerning providers. Quality reviews of providers often are hard to access or difficult to understand. Sometimes, there are legal and other barriers to obtaining reliable information concerning provider agencies. Some suggestions to address this issue might include:

• Sponsoring consumer monitoring teams to look at and report on service agencies from a consumer’s perspective;

• Developing “report card” systems that assemble various types of information about provider agencies and their performance to help better inform decision-making by individuals and families; and,

• Making the results of quality reviews more easily accessible to individuals and families, including posting such results on the Internet.

What steps need to be taken to ensure that there is an adequate, well-trained community workforce? Direct support workers (DSWs) are the backbone of community service systems. Furnishing high quality services and supports is impossible without sufficient DSWs who have sound skills. Today, there are serious problems in recruiting and retaining workers. Concerns also are expressed that workers are not adequately trained. In addition, there is no doubt that the provision of person-centered supports often requires workers to have different and more varied skills. Improving DSW pay and benefits is necessary. Other suggestions to address this issue include:

• Developing more complete worker training curricula to ensure that workers have had comprehensive training and increased funding to underwrite extended and in-depth training;

• Credentialing DSWs who have completed training and demonstrate good performance on the job so that individuals and families can be confident that workers have the skills needed to provide supports effectively; and,

• Promoting more effective collaborations between service systems and institutions of higher learning in order to secure more consistent and robust training opportunities for DSWs and other staff.

Are there other steps that should be taken to instill greater confidence in the reliability of community services and supports? Often, it is argued that there is insufficient oversight of community services and supports. The sheer size and diversity of community support systems poses significant challenges. For example, between 1977 and 1998, the number of sites where residential supports are furnished grew by more than nine-fold as states sought to reduce the use of huge congregate care facilities and emphasize regular living arrangements. States sometimes have had problems keeping up with this growth. This has lead to concerns that oversight resources are spread too thinly. In addition, sometimes the concern is expressed that consumers lack to alternative sources of assistance when they believe there complaints are not being responded to quickly and adequately. Suggestions for addressing this issue include:

• Expanded federal funding to organize and operate state quality assurance and oversight systems;

• Establishing “ombudsman” offices that individuals and families can access for assistance in addressing problems and that are authorized to conduct investigations of allegations of abuse, neglect, and exploitation; and,

• Setting up independent monitoring teams in each community to complement state quality assurance programs.

What steps need to be taken in order to measure systematically service system performance in order to improve quality? Lastly, often there is uncertainty about the quality of community supports and the extent to which people are realizing valued outcomes because there is a paucity of systematic information regarding performance. This makes it hard for policymakers, state officials, individuals and families, and other key stakeholders to judge the effectiveness of the community system is performing and identify areas where performance might be improved. Suggestions to fill this void include:

• Conducting regular surveys of individuals and families to gauge their satisfaction with services and obtain their feedback concerning system-wide performance;

• Developing approaches to measuring the extent to which key outcomes are being achieved on behalf of individuals and consumers; and,

• Providing technical and other assistance to promote and underwrite the cost of quality improvement activities across the entire service system.

Conclusion

Stakeholders in the developmental disabilities community will have to find satisfactory answers to the preceding issues in order to implement the principles outlined in the Consensus Document and instill confidence in the quality of community services while adhering to the precepts of person-centered supports

Consensus

Statement

O

ur nation must empower and support all people with developmental disabilities to realize their own vision for their lives. To accomplish this, families, friends, allies, communities, provider agencies, professionals, advocates, and government must work together to do whatever it takes to enable each individual to realize her/his unique vision. This will only happen when we put people with developmental disabilities first and support them one-person-at-a-time. Person-centered supports are for everyone.

Principles

The fundamental principles of person-centered supports are …

❖ Each person shall have the authority to define and pursue his or her own vision. Person-centered supports start with listening to the person and honoring each person’s vision. The individual’s vision must be honored, respected, and supported. The goal must be to promote each person’s empowerment, dignity, and positive self-image.

❖ Self-determination is a must. People and families are entitled to the freedom, authority, and support to control, direct, and manage their own services, supports, and funding. Individuals and families have the right to select their own services and supports as well as decide how and by whom supports are provided.

❖ Personal relationships and community membership are valued. It is absolutely vital to promote the inclusion, presence, and participation in community life for all individuals, at all ages and across all dimensions of life. People must be supported in their social and spiritual life, friendships, and intimate relationships.

❖ All networks and systems of support must collaborate in support of the person’s vision. Families, neighbors, friends, co-workers, and classmates play important roles in the lives of people with developmental disabilities. These rich, vibrant networks of support connect people to their communities. Public systems must work hand-in-hand with these networks in supporting individuals.

❖ People and families must participate as valued and empowered partners in all decision-making. People and families must have meaningful leadership roles at all levels. It is crucial that government, providers, and community organizations welcome, listen to and collaborate with people and families in solving problems, making decisions, and pursuing excellence.

❖ Individuals must have supports to contribute to their communities and engage in meaningful work. People with developmental disabilities want to and can make valuable contributions to their communities. There must be supports that assist people to make a difference. Youth and adults must be supported to have real jobs, earn money, or run their own businesses.

❖ Families are supported and valued. Families support people with developmental disabilities of all ages. Support networks must partner with families and offer critical services that not only address the needs of the family member with a disability but also support and strengthen the family itself. The unique needs and preferences of each family shall be acknowledged, respected, and accommodated.

❖ All people and families must have access to supports when and as they need them. Every individual must have easy and timely access to vital services and supports in order to achieve his or her personal vision and enjoy quality of life. There will be energetic outreach to all our nation’s diverse communities so that they can access supports on their own terms.

❖ The personal security and well being of people must be ensured. People must be secure in their own lives. They must not be exposed to neglect, abuse, or exploitation. They must have high quality health care. Ensuring the personal security and well being must not sacrifice the right of individuals to live everyday lives of their choosing in the community, exercise choice and pursue their dreams and aspirations.

❖ There must be a resolute, continuous commitment to achieve excellence in all dimensions of supporting individuals and families. High quality services enable people to realize their vision. Excellence in person-centered supports demands a strong, sustained commitment to securing and maintaining a high quality workforce, ongoing training and education, and continuous quality improvement. Individuals and families are essential partners in promoting excellence.

How We Will Know

We will know that supports are person-centered when we see that ….

People and families have authority over their lives.

← People and families feel welcome to express their ideas, needs and preferences. There is understanding and responsiveness to people’s creativity and initiative.

← Individuals and families have the time and support they need to understand, plan, and become informed to develop their own plans.

← People have support to learn about and understand the planning process, the choices available to them, the consequences of such choices, and their responsibilities.

← Individuals and their allies lead and direct the development of their support plans with assistance as needed from support coordinators, guardians, professionals, brokers, and/or agents.

← Individuals and families determine the amount and types of supports they use.

People and families determine their own supports.

← People and families have access to a wide range of home and community services, including personal assistance, transportation, assistive technology, and supports in school, on the job and in the community.

← There is support and encouragement for the choice and use of generic services, including faith communities and other social service networks.

← Based on qualities that they believe are important, people and families have free choice in hiring, firing, supervising and training support workers or selecting providers.

← Individuals and families have access to a “report card” system to assist them to find and evaluate sources of services and supports to meet their needs.

← Individuals are empowered to choose where and with whom they live. Public policy promotes the availability of housing options and enforces universal design criteria.

Individuals and families control the money available

for their supports.

← Public dollars are portable and flexible and are tied to people and families.

← Dollars change as people’s needs and circumstances change.

← Individuals and families have the authority to manage dollars and design an individual budget that takes into account the person’s wants and needs along with the resources available to the person.

← Assistance is available to individuals and families to help them to manage individual budgets, including fiscal intermediaries.

← There are efficient and effective methods of acquiring and paying for services that embody best practices and are people/family friendly, including the use of vouchers, coupons, simplified administration and reporting to individuals and families.

There are brokers or agents available to individuals and families to assist them to plan, secure, and arrange supports.

← People and families have the right to select a broker/agent of their choosing.

← Brokers/agents are free of conflict of interest, independent of service provision and accountable to the individual or family.

← Agents/brokers are persistent advocates for the individuals and families they support.

← Agents and brokers have the skills and knowledge to know what is effective.

There is support for relationships and community membership.

← People receive the support they need to have enough friends and spend time with them.

← People’s needs for intimate relationships are recognized and supported.

← People have support to take part in social, spiritual, recreational, and community activities of their choice.

← People have support to exercise their citizenship and participate in community planning and/or political activities related to their interests and desires.

Individuals are supported to contribute to their communities and engage in meaningful work.

← Work and contributions of all types that benefit the person, community, and employer are valued and supported.

← Supports for work and community contributions are integrated into the workplace and everyday places in the community.

← People who hold paid jobs enjoy the benefits of their work without fear of losing needed health care, housing, employment supports, transportation, and other supports.

← There is a good understanding of employer and community organization needs in supporting people in the workplace and making other contributions.

← The system strives for individual growth and development by supporting people to change jobs; secure job upgrades, more duties and higher pay; start a business if they want; and, explore new opportunities to contribute to their communities.

Families are valued and supported in their own right.

← Families feel welcome, supported and respected.

← All children grow up with families.

← There is recognition that families need different levels and types of supports — not “one size fits all” programs — and supports change along with the needs and circumstances of the family and the individual.

← Family supports are family-centered and family-directed. Services and supports are provided in ordinary places and build on the unique strengths of each family. Achieving outcomes important to each family’s quality of life serves as the basis of each family’s supports.

← Families receive assistance in futures planning.

Relevant information and training opportunities are continuously available to individuals and families.

← Individuals and families have ready access all the time to clear, concise, understandable, user-friendly, “how to” information about services and supports.

← There is access to information, training, technical assistance, and an ongoing cycle of learning at all levels: individuals, families, providers, state, local and federal systems, and communities.

← Information and communications are available to individuals and families in multiple languages, through many means (including online) and formats.

← Individuals and families participate in designing and are welcome to participate in all opportunities for education and training.

← There is a high priority on providing training and education to individuals and families that enables them to direct their services and take control of their lives.

A person-centered system works in partnership with all networks of support.

← People have one plan that pulls together all sources of paid, generic, and natural supports in pursuit of their personal vision.

← There is active sponsorship and encouragement of strategies that build on and enhance the role of natural supports in people’s lives.

← The system flexes to support unique and creative ways to support people, including public-private partnerships and amplifying the availability of generic supports.

← There is sponsorship and support for ongoing formal training and education programs about the role of natural and community supports in meeting the needs of individuals.

← There is vigorous outreach to communities in order to build effective partnerships with community organizations, businesses, and agencies in support of the inclusion of people in the full fabric of community life.

Individuals and families are invited, welcomed, and supported as full participants in system planning and decision-making.

← People and families have meaningful leadership roles at all times and levels of the system (state, federal, and local government, community organizations, commissions and advisory councils, and provider agencies). They are welcome and valued colleagues in policymaking, funding decisions, forums, public education and communications, and advocacy.

← The opinions of individuals and families are continuously sought to inform policy making and system improvement.

← Financial and other assistance are available to enable people and families to play leadership roles and participate in all activities that affect them.

← Self-advocates have support to form and lead their own networks of mutual support. They have opportunities for internships and mentoring.

← There is active support for families to network, organize, and help one another.

People have personal security.

← People have individualized safety plans that are customized to their unique circumstances and needs.

← Safety plans do not compromise community integration and personal freedom.

← There is routine, ongoing monitoring of every person’s personal security. Monitoring is based on each person’s circumstances and needs and is respectful of the individual’s preferences. “Must have” requirements are enforced rigorously.

← Individuals and families are active, valued collaborators in the development of policies, regulations, and practices to promote and ensure personal security.

← Potential instances of abuse, neglect, and exploitation are swiftly reported and investigated.

← When abuse, neglect, or exploitation is discovered, there is prompt action to protect the person from harm or jeopardy.

← The public developmental disability system and the legal/criminal justice system work hand-in-hand to address abuse, neglect, or exploitation of individuals.

People’s rights are affirmed and protected.

← People and families receive continuous training and education about their rights.

← Direct service and other professionals receive continuous training and education concerning the rights of people they support.

← People have easy and immediate access to legal and human rights assistance from individuals and organizations they trust.

← Individuals and families can voice complaints or seek protection without fear of recrimination. Mechanisms for reporting problems and concerns are readily accessible and simple to understand.

← Violations of people’s rights are addressed swiftly.

People get the health and related services they need.

← People have reliable and timely access to competent community health care.

← People receive support, training, and education about taking care of their health.

← There is continuous attention to wellness and prevention, including regular exams and check-ups.

← Direct service and other professionals receive training and education about helping individuals to be healthy and meeting the health care needs of people they support.

Public systems are accountable, understandable, and responsive to people with disabilities and their families.

← First and foremost, formal public systems are accountable to people and families.

← Public systems respond swiftly to problems, remove barriers to person-centered supports, and share successes and best practices at all levels.

← All regulations, laws, and policies embrace person-centered principles.

← Public systems continuously address efficiency, equitable and appropriate resource allocation, and good management.

← Public systems work hand-in-hand so that individuals and families experience a seamless system where agencies, programs and funding rules facilitate access to person-centered supports and consistently strive to achieve outcomes that individuals and families hold important.

There is universal access to community services and supports for all people and families who need them.

← There is equal and timely access to services and supports for all people and families wherever they live.

← Information about all types and sources of services is readily available to people and families at a convenient, readily accessible single location.

← Person-centered plans are prepared for people as soon as they seek services and supports begin promptly.

← State plans for universal access are designed in collaboration with all stakeholders and the plan is subject to ongoing review and evaluation.

← Public systems annually report individual and family support needs to legislative and funding bodies as well as to all stakeholders.

Cultural competency is absolutely necessary to achieve inclusion for all people with disabilities.

← There is outreach to and advocacy for the needs of diverse communities.

← Cultural differences and diversity are acknowledged and respected.

← Support strategies respect each person’s definition of what they want in life in keeping with their culture, traditions, and beliefs.

← Interpretation and translation services are readily and freely available.

There is a resolute and continuous commitment to excellence

and quality improvement.

← Individuals and others they choose lead and direct the evaluation of their own services and supports.

← People, families, and other citizens are active partners in evaluating system and provider quality and performance.

← Quality assurance/quality improvement systems focus on person-centered results. Systems collect, analyze, and disseminate sound, reliable data about individual outcomes.

← The feedback and opinions of individuals and families concerning performance at all levels is constantly sought.

← There is continuous evaluation of services and supports and continuous quality improvement to achieve better outcomes for individuals.

← There is training and technical assistance available at all levels to improve quality and performance.

A high quality workforce is a must-have.

← There is recognition that a quality workforce is vital if people and families are to exercise choice, enjoy quality of life and have safety and security in their lives.

← The workforce has the skills to meet the needs of people they support, are empowered to assist individuals in overcoming barriers, and responsive to their individual choices.

← Pay and benefits are sufficient to attract and retain skilled and committed direct service and other professionals.

← Direct service and other staff regularly participate in values-based, competency-based training (including ethics and best practices).

← Direct service and other professionals have career paths and opportunities for education and mentoring that promote growth throughout their careers.

←

Appendix

Reinventing Quality: A Grant Funded, Collaborative Effort

NASDDDS, together with the Human Services Research Institute (HSRI) and the University of Minnesota Institute on Community Integration (UM/ICI), applied for and was awarded a grant from the federal Administration on Developmental Disabilities (ADD) to evaluate and disseminate information on the reinvention of traditional quality assurance approaches that promote flexibility and innovation while ensuring the well being of recipients of publicly financed MR/DD services. Gary A. Smith, NASDDDS Director of Special Projects, is the Project Director of this three-year $750,000 grant, entitled “Reinventing Quality: Fostering Promising Practices in Person-Centered Community Services and Quality Assurance for People with Developmental Disabilities.”

Background. Person-centered services and individually tailored quality assurance practices have gained broad acceptance. Pockets of effective person-centered services and quality assurance practices, aimed at achieving consumer-valued outcomes, already exist. But, public developmental disabilities systems are inherently complex and the transition to a system that supports “one person at time” involves multiple changes and the support and collaboration of all stakeholders and constituencies. Furthermore, clear consensus regarding the essential elements that define public service systems grounded in person-centered principles is presently lacking.

The primary impediment to restructuring public systems along person-centered lines is the absence of a clear blueprint and implementation strategy. The central goal of the Reinventing Quality Project is to support efforts of state/local stakeholders of all types to accelerate the adoption of outcome-based, person-centered principles and practices in publicly funded developmental disabilities service systems, articulate a clear picture of the essential elements of such systems, and to make solid information available to all stakeholders.

Work Plan and Goals. The project will establish collaborative networks and interactive partnerships between consumers and their families, government officials, service providers and components of the ADD network (i.e., state developmental disabilities councils; university affiliated programs; and state protection and advocacy systems). Together this group will identify and share information necessary to craft service systems based on contemporary best practices and innovations in supporting people with developmental disabilities and their families with the aim of helping them realize valued outcomes, while remaining accountable for the effective use of public dollars.

The core activities of the multi-year grant have been designed to develop an interactive exchange and broad dissemination of information. These key functions are divided amongst the three participating organizations, with NASDDDS acting as the overall coordinator of project activities. The first major project activity will be the formation of the Participant Advisory Committee (PAC) comprised primarily of individuals and families who receive publicly funded developmental disabilities services and/or have personal experience with disability. Appointed in consultation with ADD, the PAC will have the following primary roles: 1) to work with project personnel in developing key project directions and designs; 2) to provide direct and continuing guidance to project personnel and to ensure that the project’s products meet the needs of individuals with developmental disabilities and their families; 3) to establish criteria by which to select, evaluate and report on best and promising practices, exemplary quality assurance programs and other component activities that reflect the interests and concerns of people with developmental disabilities and their families; 4) to participate in and provide leadership at project conferences; and 5) to provide continuous feedback to project personnel concerning the conduct of the project.

Dissemination of Information. In the first year of the project NASDDDS, in collaboration with UM/ICI, established a “Quality Mall” Web site that is the project’s most visible centerpiece and its informational hub. Activated in October 2000, the “Quality Mall” provides an interactive forum for communication among stakeholders as well as acting as a single source of relevant information about person-centered services and quality practices. Mall services, products and information include investigated and validated practices or approaches that have been determined to be effective from the perspective of the system stakeholders -- especially people with developmental disabilities and their families.

The Mall has various “shops” including: (a) the Person Directed Services Store; (b) the Self-Advocacy Store; (c) Family Place; (d) the Staffing Store; (e) the Community Center; (f) the Community Center; (g) the Housing Office; (h) the Life and Planning Store; (i) the Service Provider Store; (j) the Systems Change Shop; (k) the Access Unlimited Store; (l) the Health and Safety Store; (m) the Government Office Store; (n) the Media Center; (o) the Quality Cinema; (p) the News Stand; (q) the Communication Center; and (r) the Coffee Shop.

The Mall provides customers with information and resources in a variety of forms:

• Interactive learning and training opportunities (e.g., live web cast presentations by experts on the topics such as quality management, opportunities for self-advocates to conduct their own presentations, on demand slide shows, interactive modules and self based learning lessons and content reviews/feedback). The “Quality Cinema” offers video clips of consumers commenting on valued, quality services and supports.

• Forums (e.g., employing “open” or “closed” discussions, asynchronous message boards, and real-time “chat rooms” that can serve as dynamic learning centers, where interested parties and experts can “talk” in an open or confidential forum). An example is the “Coffee Shop.”

• and, “shops” or databases that include “for more information” follow up contacts, cross indexing within the database that supports searches based on user-defined interests as well as technical assistance and consultation resources.

The Web site also serves as the gateway to many other sites that contain germane information.

Printed Publications. The project team also will prepare reports and publications, such as this document, covering topics related to various aspects of the provision of consumer-outcome oriented community services and supports and related topics in quality assurance and improvement. These topical publications will summarize the “state of the art” concerning practices in a specific area and describe state, local, provider and other initiatives related to the topic.

Additionally, noteworthy practices that emerge during the course of the project will be featured in NASDDDS’ monthly newsletter, the Community Services Reporter, in order to call attention to featured practices and promote project visibility. UM/ICI, furthermore, will devote one or more issues of its IMPACT newsletter to topics pertaining to this project. The IMPACT newsletter format lends itself to treating single topics in greater depth than is possible with the CSR newsletter.

Case Studies of Model States/Localities. Project personnel and the PAC will identify states that have especially solid reputations for furnishing consumer outcome oriented community services and supports and using effective quality assurance strategies. With HSRI taking the lead, project personnel will visit four states (Wyoming, Wisconsin, New Hampshire, and Washington State) to learn from key stakeholders the critical elements and strategies that were instrumental in bringing about broad scale system reconfiguration. These in-depth case studies will be conducted in years two and three of the project.

Over the course of each three-day visit to the selected state (as well as localities therein), the project team will conduct interviews with a wide range of stakeholders, including persons with developmental disabilities, family members, state officials, and policymakers, advocates, service providers, and others. The aim will be to gather and synthesize information in a report concerning how the particular jurisdiction addresses each key issues. Case study reports will be prepared and made available in hard copy as well as on the Quality Mall.

Meetings and Conferences. During year one of the project, the PAC and project team convened the “Consensus Conference” that set the stage for the project with the development of the “Consensus Document.” In addition to the Consensus Conference, two Reinventing Quality conferences will be organized by the PAC and the project staff. Structured around presentations by states and local officials with innovative practices in quality assurance/quality improvement, each conference will have a distinctive theme to be devised in consultation with ADD and the PAC. As part of the conference planning, the Quality Mall also will be used to conduct a poll where mall users will be able to indicate which topics hold the greatest interest for them.

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[1] States frequently establish a number of service slots within their service systems. Once a person with a disability received a slot, he/she has this slot for life. Individuals and their families without services must wait for a service slot to become available.

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The Quality Mall () depends on you to keep up-to-date with the best products and projects in services to people with disabilities. If you know of a product that you would like to share, please contact the Mall staff by going to and selecting the “nominate a product” button or contact a staff person at rtc@icimail.coled.umn.edu.

also can use volunteers with expertise in the field to help screen and edit product nominations. Use the above e-mail address or call (612) 624-6328.

“People should be able to do what they want, when they want, with whom they want and as often as they want.”

“Self-Determination turns the system upside down and puts people with disabilities at the top. It changes the way things are done so that we have choice and control.”

Gail Bottoms

“People who have control need to become listeners.”

John Jordan

“Families know their family members better than anyone.”

“People have the right to make mistakes and try again.”

“Money equals power and therefore choice.”

“Brokers/agents work for individuals and families to help them get what they need.”

“There must be support for real relationships.”

Mary Gennaro

“Each individual is empowered to define ‘meaningful,’ ‘work’ and ‘contribution’ on his/her own terms.”

“Family relationships are honored and valued.”

“Information is essential to choice and individual/ family empowerment.”

“The public system does not drive everything but must work in tandem with all support networks.”

“There must be a partnership with self-advocates … Nothing about us without us.”

Liz Obermayer

“Community integration and maintaining people’s ties with their families and other natural supports is essential for them to be safe and secure.”

“Public dollars are used to give people the supports they need – no more, no less.”

“An improved quality of life as defined by the individual is the central outcome that must be achieved.”

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