Best Practices

The Maryland Developmental Disabilities Council
August 1996

INTRODUCTION
The system that provides services to people with disabilities is changing. A new set of practices is emerging. These practices demonstrate a shift from programs to supports, from segregated settings to communities. People with disabilities (including people with the most severe disabilities) are realizing their power through real jobs and real homes. When an individual's quality of life is defined through relationships, choices, employment, health, neighborhood, mobility, housing and standard of living the person becomes the central, critical focus. This"person directed" quality is becoming a major focus of public policy for persons with developmental disabilities.

There are fundamental principles that help to define and recognize those practices which influence a positive outcome — a good quality of life — for people with developmental disabilities. These practices, found in the innovative ways that people with developmental disabilities are supported in their communities, have taken shape in demonstration projects implemented through the Maryland Developmental Disabilities Council. The examination of these innovative ideas provides strategies that expand best practices and allow for other practices that, when fully implemented, promise to improve the delivery of services to people with developmental disabilities.

These Best & Promising Practices focus on each component of support — the person, the community support organization, and the service system. They recognize the uniqueness of the individual, the importance of community organizations, and the significance of the system. This guide captures these Best & Promising Practices and provides a foundation for policy and systems change.

VALUES
Certain fundamental values are the foundation for the best & promising practices put forward in this paper.

These values are as follows:

All people must have a meaningful voice in their own affairs;
Individuals and families have the right to be involved in the design, operation and monitoring of services and programs which they use;
All people are entitled to the supports they need to assure their opportunities to live healthy, safe and fulfilling lives;
All people have the right to be included and involved in the community regardless of their abilities or disabilities;
Families deserve support to care for their family member at home, which builds on social networks and natural resources and encourages inclusion of individuals with disabilities within their communities.

FOCUS ON PEOPLE
Best & promising practices recognize a person as a whole human being & unique, complex, and changing. The term"support" describes a way of helping a person that takes into account his or her individual qualities, preferences and life situation. Different types of supports are available; how much and how often supports are provided depends upon individual needs and preferences.

Communities Include Everyone
People take part in the life of their neighborhoods and communities by exploring and trying out possibilities — places, events, activities and relationships. From community membership, people accumulate the wealth of experiences and memories that enrich life.

Personal Choices Count
People are encouraged to think about the many choices they might make, including their daily, as well as lifetime, hopes and goals.

People Direct their Supports
A person's needs, preferences, way of life and hopes for the future are the foundations of planning effective supports. Planning involves people and those who know them best. It means staying in contact as time passes to understand situations and to adapt supports as needs change.

Intrusion on People is Limited
Individual privacy is respected and the extremely personal information about people who rely on others for support is safeguarded. Support aims to strengthen, not disrupt, a person's family ties and friendships, work and other important relationships.

People Have the Chance to Contribute
People are encouraged and assisted to make contributions to others and to their communities as they desire. It is important to help discover and channel each person's unique talents, abilities and interests.

Community Support Comes First
Professional support compliments a person's family and other personal relationships. To keep a person from being labeled"special," adaptations are made, where possible, to the same sources of help available to all members of the community.

Different Backgrounds Matter
The importance of a person's cultural, national and ethnic identity is recognized. The commitment to community inclusion extends to helping people have pride and join in the culture they share with others.

Security is a Financial Matter
People are supported in the best financial situation they can reach and maintain. Stable employment, when it provides fair wages and benefits, can enhance a person's life. When employment does not provide medical benefits, people maintain access to medical services through public benefits.

Good Health is Basic
Having a disability is not the same as sickness and should not be confused with an automatic need for intensive health, medical or nursing care. Wise use of health care services is the same for people with disabilities as it is for people in general. This applies to routine prevention and treatment as well as to specialized care. Medical treatment is recommended according to individual need and does not differ from common approaches because of assumptions about a person's disability.

FOCUS ON COMMUNITY SUPPORT ORGANIZATIONS
People's lives can be profoundly affected by the organizations that provide support to them. For people with lifelong disabilities who need enduring support beyond what their families and friends can give, community organizations are essential. At an organizational level, best & promising practices are driven by a commitment to support people in community life and in the ways they choose to live their lives. Best & promising practices require that these organizations evolve from traditional approaches of fixed and standardized service to approaches and supports designed around people.

Concern for People is the Heart of the Organization
The organization's purpose for existence is the people it supports. Primary goals evolve from the individual's goals of community participation, personal choice and control, and security. The individual talents and interests of staff at all levels are valued, recognized and tapped on behalf of the organization and the people served. Management is concerned that staff like their jobs and have the support and opportunity they need to develop.

New Approaches Help
Organizations critique their performance and try to learn from experience. Long range planning keeps the organization focused on meeting its purpose. The organization's mission and the conditions in which it operates are continuously assessed to clarify goals and fine tune strategies to achieve the desired outcomes.

Resources are Tied to Outcomes
The organization operates flexibly within its resources. Activities which are wasteful, obsolete and do not contribute to positive outcomes for people are abandoned. Organizations utilize effective management structures that disperse control necessary to achieve best practices and ensure that the size of the organization does not affect its ability to focus on people.

People Keep Their Independence
People are supported to maintain control over their lives and avoid crisis situations. Family and friends are recognized as important to a person's quality of life, especially because of their invaluable abilities to support the person's choices and independence.

Quality is a Constant Quest
The organization continuously invests in strategies to maintain and improve the quality of its support to people. People who receive services from the organization participate in determining the quality assurance approaches and are the most important participants in measuring quality. Special attention is paid to accomplishments, successes and innovations throughout the organization.

FOCUS ON THE SYSTEM
The government policies and initiatives which represent public commitment to people with developmental disabilities operate with a systems approach. A system integrates its separate parts — leaders, departments, plans, budgets, rules, personnel — to work with a unified purpose, a single driving force. The system must assure that its varying activities share the common purpose of serving its primary customers — the people who rely on it for support.

People Drive Budgets and Funding Methods
The system has the capacity to know the true costs of supporting the people who rely on it. At the same time, the system ensures that the "product"people need is actually available, affordable, and reliable and that people are supported in their efforts to obtain it.

Coordination Helps People Through the System
The system offers people a source of coordination to help them with their choices and needs, and assist in locating supports. The coordination system operates on behalf of people receiving support and is independent from state and local government units that regulate and monitor provision of supports.

Outcomes Steer Regulations
The system's regulations guide and clarify what must be accomplished and what is not acceptable in providing support to people. Regulations provide incentives to solve problems concerning the support of people. However, compliance with regulations does not insure best practices. It only ensures a minimum quality to the services. As such, regulations do not replace carefully crafted strategies that determine and improve quality as agreed upon by people receiving support, community organizations and other expert sources on best practices.

State Government Promotes and Demonstrates Best & Promising Practices
State government shares and supports the vision of self-directed services for people with disabilities and their families. Top managers in state government are committed to building the community's capacity to support all people and to end reliance on institutions.

Local Communities are Recognized by the System
The system recognizes the primary role and rich resources of local communities in supporting people. When state policy is formed, community representatives are included and the diversity of local communities is respected and accounted for.

We would like to thank the following people for their work on this document:
Carol Beatty, Susanne Elrod, Mary Beth Greene, Cindy Kauffman, Lee Kingham, Rich Luecking, Joanna Pierson, Kate Rollason

	Best Practices The Maryland Developmental Disabilities Council August 1996 INTRODUCTION The system that provides services to people with disabilities is changing. A new set of practices is emerging. These practices demonstrate a shift from programs to supports, from segregated settings to communities. People with disabilities (including people with the most severe disabilities) are realizing their power through real jobs and real homes. When an individual's quality of life is defined through relationships, choices, employment, health, neighborhood, mobility, housing and standard of living the person becomes the central, critical focus. This"person directed" quality is becoming a major focus of public policy for persons with developmental disabilities. There are fundamental principles that help to define and recognize those practices which influence a positive outcome — a good quality of life — for people with developmental disabilities. These practices, found in the innovative ways that people with developmental disabilities are supported in their communities, have taken shape in demonstration projects implemented through the Maryland Developmental Disabilities Council. The examination of these innovative ideas provides strategies that expand best practices and allow for other practices that, when fully implemented, promise to improve the delivery of services to people with developmental disabilities. These Best & Promising Practices focus on each component of support — the person, the community support organization, and the service system. They recognize the uniqueness of the individual, the importance of community organizations, and the significance of the system. This guide captures these Best & Promising Practices and provides a foundation for policy and systems change. VALUES Certain fundamental values are the foundation for the best & promising practices put forward in this paper. These values are as follows: All people must have a meaningful voice in their own affairs; Individuals and families have the right to be involved in the design, operation and monitoring of services and programs which they use; All people are entitled to the supports they need to assure their opportunities to live healthy, safe and fulfilling lives; All people have the right to be included and involved in the community regardless of their abilities or disabilities; Families deserve support to care for their family member at home, which builds on social networks and natural resources and encourages inclusion of individuals with disabilities within their communities. FOCUS ON PEOPLE Best & promising practices recognize a person as a whole human being & unique, complex, and changing. The term"support" describes a way of helping a person that takes into account his or her individual qualities, preferences and life situation. Different types of supports are available; how much and how often supports are provided depends upon individual needs and preferences. Communities Include Everyone People take part in the life of their neighborhoods and communities by exploring and trying out possibilities — places, events, activities and relationships. From community membership, people accumulate the wealth of experiences and memories that enrich life. Personal Choices Count People are encouraged to think about the many choices they might make, including their daily, as well as lifetime, hopes and goals. People Direct their Supports A person's needs, preferences, way of life and hopes for the future are the foundations of planning effective supports. Planning involves people and those who know them best. It means staying in contact as time passes to understand situations and to adapt supports as needs change. Intrusion on People is Limited Individual privacy is respected and the extremely personal information about people who rely on others for support is safeguarded. Support aims to strengthen, not disrupt, a person's family ties and friendships, work and other important relationships. People Have the Chance to Contribute People are encouraged and assisted to make contributions to others and to their communities as they desire. It is important to help discover and channel each person's unique talents, abilities and interests. Community Support Comes First Professional support compliments a person's family and other personal relationships. To keep a person from being labeled"special," adaptations are made, where possible, to the same sources of help available to all members of the community. Different Backgrounds Matter The importance of a person's cultural, national and ethnic identity is recognized. The commitment to community inclusion extends to helping people have pride and join in the culture they share with others. Security is a Financial Matter People are supported in the best financial situation they can reach and maintain. Stable employment, when it provides fair wages and benefits, can enhance a person's life. When employment does not provide medical benefits, people maintain access to medical services through public benefits. Good Health is Basic Having a disability is not the same as sickness and should not be confused with an automatic need for intensive health, medical or nursing care. Wise use of health care services is the same for people with disabilities as it is for people in general. This applies to routine prevention and treatment as well as to specialized care. Medical treatment is recommended according to individual need and does not differ from common approaches because of assumptions about a person's disability. FOCUS ON COMMUNITY SUPPORT ORGANIZATIONS People's lives can be profoundly affected by the organizations that provide support to them. For people with lifelong disabilities who need enduring support beyond what their families and friends can give, community organizations are essential. At an organizational level, best & promising practices are driven by a commitment to support people in community life and in the ways they choose to live their lives. Best & promising practices require that these organizations evolve from traditional approaches of fixed and standardized service to approaches and supports designed around people. Concern for People is the Heart of the Organization The organization's purpose for existence is the people it supports. Primary goals evolve from the individual's goals of community participation, personal choice and control, and security. The individual talents and interests of staff at all levels are valued, recognized and tapped on behalf of the organization and the people served. Management is concerned that staff like their jobs and have the support and opportunity they need to develop. New Approaches Help Organizations critique their performance and try to learn from experience. Long range planning keeps the organization focused on meeting its purpose. The organization's mission and the conditions in which it operates are continuously assessed to clarify goals and fine tune strategies to achieve the desired outcomes. Resources are Tied to Outcomes The organization operates flexibly within its resources. Activities which are wasteful, obsolete and do not contribute to positive outcomes for people are abandoned. Organizations utilize effective management structures that disperse control necessary to achieve best practices and ensure that the size of the organization does not affect its ability to focus on people. People Keep Their Independence People are supported to maintain control over their lives and avoid crisis situations. Family and friends are recognized as important to a person's quality of life, especially because of their invaluable abilities to support the person's choices and independence. Quality is a Constant Quest The organization continuously invests in strategies to maintain and improve the quality of its support to people. People who receive services from the organization participate in determining the quality assurance approaches and are the most important participants in measuring quality. Special attention is paid to accomplishments, successes and innovations throughout the organization. FOCUS ON THE SYSTEM The government policies and initiatives which represent public commitment to people with developmental disabilities operate with a systems approach. A system integrates its separate parts — leaders, departments, plans, budgets, rules, personnel — to work with a unified purpose, a single driving force. The system must assure that its varying activities share the common purpose of serving its primary customers — the people who rely on it for support. People Drive Budgets and Funding Methods The system has the capacity to know the true costs of supporting the people who rely on it. At the same time, the system ensures that the "product"people need is actually available, affordable, and reliable and that people are supported in their efforts to obtain it. Coordination Helps People Through the System The system offers people a source of coordination to help them with their choices and needs, and assist in locating supports. The coordination system operates on behalf of people receiving support and is independent from state and local government units that regulate and monitor provision of supports. Outcomes Steer Regulations The system's regulations guide and clarify what must be accomplished and what is not acceptable in providing support to people. Regulations provide incentives to solve problems concerning the support of people. However, compliance with regulations does not insure best practices. It only ensures a minimum quality to the services. As such, regulations do not replace carefully crafted strategies that determine and improve quality as agreed upon by people receiving support, community organizations and other expert sources on best practices. State Government Promotes and Demonstrates Best & Promising Practices State government shares and supports the vision of self-directed services for people with disabilities and their families. Top managers in state government are committed to building the community's capacity to support all people and to end reliance on institutions. Local Communities are Recognized by the System The system recognizes the primary role and rich resources of local communities in supporting people. When state policy is formed, community representatives are included and the diversity of local communities is respected and accounted for. We would like to thank the following people for their work on this document: Carol Beatty, Susanne Elrod, Mary Beth Greene, Cindy Kauffman, Lee Kingham, Rich Luecking, Joanna Pierson, Kate Rollason Home \| About the Council \| Projects \| Funding \| Publications and Reports \| Resources \| Site Map \| Contact Us