self determination handbook

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SELF-DETERMINATION HANDBOOK A publication of the Chester County Department of Mental Health/ Mental Retardation 601 Westtown Road, Suite 340 PO Box 2747, West Chester PA 19380-0990 610-344-6265 Second Printing July 2001


Outline of Handbook Contents Introduction and Background Principles of Self - Determination Discussion Questions Person Centered Planning Resource Information Articles: Glossary of Terms and Acronyms


Background and Credits The Chester County Mental Retardation Program in association with its Self-Determination Core Committee has prepared this handbook in order to promote greater understanding of Chester County’s Self-Determination initiative. We believe that knowledge is the foundation for empowerment and hope that the information in this handbook encourages people with mental retardation and those who support them to explore new possibilities. This handbook is being made available through a grant from the Pennsylvania Office of Mental Retardation. The handbook includes definitions ideas, stories, tools and other information that may be useful when planning the future. Periodically, we will be issuing updates that may be added to the handbook.


Background and Credits The Chester County Department of Mental Health/ Mental Retardation would like to thank the many organizations whose materials were used as sources or included in this handbook: Pennsylvania Office of Mental Retardation Philadelphia Self-Determination Project Human Services Research Institute Networks for Training and Development, Inc. Allegheny County Mental Retardation Program Philadelphia Office of Mental Health and Mental Retardation, MR Services Division Dauphin County MH/MR Program


Self Determination Initiative of Pennsylvania Guiding Principles Understanding of and Commitment to the following principles are essential. All of these principles should be weighed against each action and each decision made within Pennsylvania's system of supports and services. Choice - People have the right to choose how they will live their lives, where they will live in the community and with whom. Relationships - The relationships a person has with others must be treasured, nurtured and protected. Contribution - Everyone has the ability to contribute to their community in a meaningful way. Roles and Responsibilities - Individuals, as they take greater control over their lives and resources, assume greater responsibility for their decisions and actions. Control - People have the power to make decisions and truly control their lives. Dreams - All people have hopes and dreams about something in their lives. Dignity and Respect - All people have an inherent right to be treated with dignity and respect. Fiscal Conservatism - Making things happen does not always require money. Attitude - Nothing is impossible. Replace “No we can’t” with “How can we?” “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” - Margaret Mead

What Is Self-determination?: 

What Is Self-determination? Self-determination grows out of the values of everyday lives Freedom, support, control, and responsibility are essential for individuals

What Is Self-determination? Continued: 

What Is Self-determination? Continued Self-determination respects the rights of all people as they determine the course of their lives while offering them the supports needed to pursue their individual goals Self-determination returns to the individual the control and responsibility of how public dollars are spent Self-determination reaches beyond what public funding can offer


What Self-Determination can mean for you... Freedom to plan a real life Support for building a life in my community Responsibility to give back to my community Authority to control how my money is spent Being a citizen in my community and exercising my rights




With a shift to individual choice and control, come greater responsibilities and risks. Individuals and those who care for them must challenge themselves to identify alternatives that will best support them in their life choices. Individuals and those who care for them must also identify what family and natural supports can be used as part of an overall Individual Plan. On the next few pages are some questions that can be used to start a discussion about ideas for the future. More on Self-Determination


Self-Determination begins with the smallest parts of every day life…. Things like…. Deciding what you’d like for lunch. Deciding what time to go to bed. Deciding what you do with your free time. Deciding who you want to be with. Practice making decisions like these and then speak up about them. Once you are comfortable with the little things, try thinking about and making choices about bigger things. How do we start?

What Do People Want ?: 

What Do People Want ? Choice in the decisions of life Control of relationships, money, transportation, services, medicine and staff Permanency of life in community with family/friends Security - competent service and safety in the community Freedom of movement and from stigma Prosperity - freedom from poverty and a chance to be successful Individuality - having a home and personal history, having dignity and status Relationships - with friends, family and partners Recognition of abilities, capacities and gifts Privacy - of records, files and history and the option to be alone Citizenship - part of the community Passion - to love, fight and dream


Ideas Think about where you want to live… Do you want to move? Do you want to live alone or with other people? If you want to live with other people…. Who? Family, friends? Do you like sharing a room or do you want your own bedroom? What kind of people would make good roommates for you? Quiet or Active? Early risers or those who stay up late? What type of housing would work best for you? Alone or Sharing? My family home? An apartment? A house? A condominium? Where would you like to live? In a town? Which one? In the countryside? Where?


Think about where you want to work… What kind of work do you want to do? Can you work Full-time? How about Part-time? How many hours a day? How many days a week? Do you need help getting or keeping a job? Who might be able to help? Family members? Friends? Professional staff? What are your skills? What are you good at doing? What do you like doing? When do you work the best? In the morning? In the afternoon? In the evening? Late at night? Do you have transportation? Do you drive? Can you use public transportation? Do you have family or friends that can give you a ride? Do you work best with other people or on your own? Do you want to work indoors or outdoors? Ideas


Think about what you like to do for fun … What do you enjoy doing? Do you like sports? Watching or participating? Do you like parties? Or getting together with friends? Do you like movies? Church Activities? Do you like music? Do you like to do craft projects? Do you have hobbies? Do you like to travel? Do you like to shop? Go out to restaurants ? Do you like to exercise? How can you get around in your community? Do you drive? Can you use public transportation? Do you have family or friends that can give you a ride? Who can help you find things to do? Family? Friends? Professionals? Do you have money to spend on leisure time activities? Ideas


What else is important in your life? Spirituality? Helping others? Learning about new things? Adventure? Quiet time? Having a pet? Friends? How can you make sure the things you enjoy are a part of your life? Ideas

What Skills Can You Use to Have the Life You Choose? Or, What Are You Good at Doing?: 

What Skills Can You Use to Have the Life You Choose? Or, What Are You Good at Doing? Making friends? Getting around in the community? Counting? Reading? Saying what you like and don’t like? Being on time? Cooking? Shopping? What else? Make up your own list…….

A Key to Your Future... Speak Up !: 

A Key to Your Future... Speak Up ! Once you have some ideas about what you want in your life, talk with your family, your friends, your case manager, and your provider staff. Remember, we can’t always get everything we want, but if we try - and get support from the important people in our lives, we can get a lot more of what we need to be happy!


Making a plan…... When you meet with the case manager, you will be working on a Person Centered Plan. It may be called something else like: a Personal Support Plan; an Essential Lifestyle Plan; a PATH; Student Mapping; or Personal Futures Planning. These are all techniques that can be used to uncover all of the specifics that will ensure that the plan is truly individual and matches the needs and desires of the person. This is the time to bring up all of your ideas and suggestions so that the details can be discussed and incorporated into the Person Centered Plan.


Personal Futures Planning Project, Insight, Vol. 1, No. 2, Fall 1990, P. 3


DEFINITION OF SUPPORTS Resources and strategies that promote the interests and causes of individuals with and without disabilities; that enable them to access resources, information and relationships inherent within integrated work and living environments: and that result in their enhanced independence, interdependence, productivity, community integration and satisfaction.


More thoughts….. Support is based on an understanding of people as people, on an understanding of the personal as well as technical aspects of helping, and on an understanding of the role of an ally or supporter. Understanding a Support Perspective An attitude of Support Belief in people’s judgement A stance of Support Acting as a support - rather than guiding or controlling The Actions of Support Recognizing Skills and Abilities Listening Sharing

What Is Already Going on in Chester County ?: 

What Is Already Going on in Chester County ? There are more than 30 people who now use Customer Certificates to purchase Day Supports of their own choosing. More than a dozen people who have mental retardation have purchased their own homes or condominiums and now live in the setting that they wanted. Of the people who receive Family Support Services in Chester County (approximately 500) more than half do so through the Family-Driven Project, where individuals and families choose the specific supports that they need, and develop a support plan with their Case Manager. Plan requests are processed and funds are allocated.


HMMM…. “Be a bridge, not a wall. Be a support, not a crutch.” - John O’Brien

Articles, Stories and Resource Information: 

Articles, Stories and Resource Information All over the country and the state, human service organizations are trying new ways of supporting people who have developmental disabilities. In this chapter are newsletters, articles and other information on what others are doing. You may want to look at them and see if one of the ideas looks good to you. Chester County is also trying to find new ways to provide supports to people and is interested in hearing from you!


Human Services Research Institute 850 Lancaster Drive; Salem OR 97301 (503-362-5682)

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