Transcript CHESTER COUNTY DEPARTMENT OF MENTAL HEALTH/ MENTAL RETARDATION

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
Reprinted July 2001
Chester County MR Program
3
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.
Reprinted July 2001
Chester County MR Program
4
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
Reprinted July 2001
Chester County MR Program
5
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
“Never doubt that a small group of thoughtful, committed citizens can change the world.
we?”
Indeed, it is the only thing that ever has.”
- Margaret Mead
Reprinted July 2001
Chester County MR Program
6
What Is Self-determination?
 Self-determination
grows out of the
values of
everyday lives
 Freedom, support,
control, and
responsibility are
essential for
individuals
Reprinted July 2001
Chester County MR Program
7
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
Reprinted July 2001
Chester County MR Program
8
What Self-Determination can mean for you...
Freedom to plan a real life
Support for building
a life in my community
Authority to control
how my money is spent
Responsibility to give
back to my community
Being a citizen in my community
and exercising my rights
Reprinted July 2001
Chester County MR Program
9
Something to think about….
IF YOU ALWAYS DO
WHAT YOU’VE
ALWAYS DONE
YOU’LL ALWAYS GET
WHAT YOU’VE
ALWAYS GOTTEN
Reprinted July 2001
Chester County MR Program
10
More on Self-Determination
• 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.
Reprinted July 2001
Chester County MR Program
11
How do we start?
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.
Reprinted July 2001
Chester County MR Program
12
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
Reprinted July 2001
Chester County MR Program
13
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?
Reprinted July 2001
Chester County MR Program
14
Ideas
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?
Reprinted July 2001
Chester County MR Program
15
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?
Reprinted July 2001
Chester County MR Program
16
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?
Reprinted July 2001
Chester County MR Program
17
What Skills Can You Use to Have the
Life You Choose? Or, What Are You
Good at Doing?
 Making
What else?
Make up
your own
list…….
Reprinted July 2001
friends?
 Getting around
in the
community?
 Counting?
 Reading?
 Saying what
you like and
don’t like?
 Being on time?
 Cooking?
 Shopping?
Chester County MR Program
18
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!
Reprinted July 2001
Chester County MR Program
19
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.
Reprinted July 2001
Chester County MR Program
20
PERSONAL FUTURES PLANNING
An Overview
Personal Futures Planning is an orderly process that guides family members, friends, service
providers and the person him/herself through three essential planning activities:
1) Describing a desirable future with the person, 2) Developing a schedule of activities and
supports that will organize available resources to move toward that future; and 3) Accepting
responsibility for using available opportunities and dealing with the lack of needed activities
and supports.
Personal Futures Planning was developed by Beth Mount, Ph.D., owner and founder of
Graphic Futures, Inc. Her intent was to develop a planning process that would complement
and enhance the traditional planning approaches that are common in most human service
agencies. Most of us know these plans by their various initials - IPP (Individual Program
Plan), ISP (Individual Service Plan) and IEP (Individual Education Plan).
Even though the word "individual" is used to describe all of these plans, what often happens
is that the content of these plans are heavily influenced by:
 the service options that a particular agency offers;
 the latest trends in the field;
 bureaucratic categories or state policies;
 Public laws and/or lawsuits.
Personal Futures Planning provides one way to circumvent the limitations inherent in these
traditional planning models.
Personal Futures Planning Project, Insight, Vol. 1, No. 2, Fall 1990 P. 3
Reprinted July 2001
Chester County MR Program
21
What is a Personal Futures Plan?
In essence, Personal Futures Planning builds a team of people who
are interested in making a positive difference for and with a particular
person. There are two or three people involved at this stage - the
person for whom the plan is to be arranged and one or two others of
his/her choosing who know and care about the individual. Part of
what is done in this phase is to identify people to be included in the
second phase, which is the actual development of the plan. The
planning team may be as large as 10 to 15 people or as small as
five. It usually includes the focus person and the people who care
about him or her. It is advisable to have a team that has a variety of
perspectives and interests and will hopefully include neighbors,
friends and extended family in partnerships with paid staff.
The planning team convenes for about two hours at a comfortable
place and is guided by a facilitator. The team facilitator reviews the
profile information and asks people to elaborate.
When the
description is complete, the team pauses to reflect and then, based
on what is noticed in the individual's life patterns, interests and
preferences, the team:
 Describes a specific and detailed picture of a desirable future;
 Identifies obstacles to that future;
 Searches for opportunities or ways around the obstacles;
 Brainstorms about strategies;
 Decides on priorities for getting started;
 Agrees on the next meeting time and place.
Personal Futures Planning Project, Insight, Vol. 1, No. 2, Fall 1990, P. 3
Reprinted July 2001
Chester County MR Program
22
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.
Reprinted July 2001
Chester County MR Program
23
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
Reprinted July 2001
Chester County MR Program
24
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.
Reprinted July 2001
Chester County MR Program
25
HMMM….
“Be a bridge, not a wall.
Be a support, not a crutch.”
- John O’Brien
Reprinted July 2001
Chester County MR Program
26
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!
Principles of Participant Driven Supports
How Are Things Going In Your State?
We must develop a service system that:
1. Is consistent with practices that emphasize opportunity for people with
developmental disabilities to:
 be included in their local communities, participate in their local communities;
 contribute to their local communities;
 determine the substance and flavor of their own lives.
2. Is consistent with help-giving practices that enable or empower those who are
receiving help.
3. Works to hold down costs and maximize cost savings.
Within a participant driven support framework, actions to achieve these goals must:
 Be guided by a vision that clearly articulates these goals.
 Assures that people with disabilities and family members are equal partners in
the planning processes.
 Results in a flow of resources that clearly places service recipients in the lead,
promoting choice in the supports delivered and in the supplier of these supports.
 Results in a flexible response to needs that may or may not require delivery of
paid services.
 Promotes collaboration among potential sources of support, including public,
private and natural support networks.
 Be evaluated against outcome based performance measures tied to the stated
vision.
 Be managed from a unified funding base ("single stream" funding).
 Invokes practices and incentives to hold down costs and realize cost savings.
Consider these goals and principles in terms of your current state system or the future
system that is being considered.
 What do you think?
 What is happening in your state that is consistent with these ideals?
 What is happening in your state that is inconsistent with these ideals?
Human Services Research Institute
850 Lancaster Drive; Salem OR 97301 (503-362-5682)
Reprinted July 2001
Chester County MR Program
28