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Future Planning: A Roadmap o
Our Futures, Our Wishes
f
2 | Our Futures, Our Wishes Our Futures, Our Wishes | 3
Voices From Our Community
This Roadmap reects the efforts and contributions from individuals
with disabilities, family members, direct support professionals, and other
professionals in the disability eld. We hope that it becomes one of many
useful tools that are available to help you during your personal and unique
journey of planning for your futures. Our goal is to integrate the research
about future planning and apply it to something useful. Most importantly, this
Roadmap reects the experiences that you have shared with us.
Special thanks to the individuals who participated in the
online surveys and interviews. Your experiences and
knowledge greatly informed the development of this future
planning roadmap. Your personal stories enhanced our
understanding about real lives.
Content: Lynne Tomasa, PhD, MSW
Design: Patricia Philbin
Illustrations: Cori Cummings
Spanish Translation: Patricio Negrete
Editing: Margaret Mel
With contributions from the staff at the University of
Arizona Sonoran University Center for Excellence in
Disabilities Education, Research and Service (UCEDD):
Melissa Kushner MSW, Jacy Farkas MS, Laura Schweers,
BS, Susan Voirol, MSW, and Yumi Shirai, PhD.
This workbook was developed for the Arizona Developmental Disabilities
Planning Council by the University of Arizona Sonoran University Center
for Excellence in Disabilities Education, Research, Service.
Publication Date: June 2018
Our Futures, Our Wishes | 3
Overview
Future planning is an important yet difcult process that involves gathering
information, looking at options, making decisions that may change, creating
back-up plans, asking for help, and a lot of self-reection. All of this is done with
the individual who has a disability as the central person who has his or her own
hopes and dreams. It is a balancing act that can be made easier through open and
honest conversations.
The Future Planning - A Roadmap of Our Futures, Our Wishes is divided into four chapters.
Chapter One - Future Planning: What Is It All About?
This chapter includes topics and questions that come up frequently in discussions
about future planning. It is about exploring goals, triggers, options, and the
personal and family journey during the planning process.
Chapter Two - Worksheets to Guide Communication and Planning
This chapter includes worksheets that can help to: get to know the individual and
what is important to him or her, what is needed to support daily activities, how to
enhance quality of life, and face transition and change.
Chapter Three - Important Considerations
This chapter includes topics that often come up when a person approaches
adulthood. It explores financial and legal decisions while emphasizing the
importance of supported decision making when appropriate.
Chapter Four – Relationships and th
e Human Connection
This chapter shares experiences from individuals with disabilities and their families
who support them. Topics include family relationships, changing roles, professional
support, value of friendships, and culture and tradition. It ends with profiles of
individuals and their personal journeys.
4 | Our Futures, Our Wishes Our Futures, Our Wishes | 5
Table of Contents
Introduction 6
Chapter One: Future Planning, What is it all about? 7
Think Future, Start Now: Future Planning Goals ...........................................................8
My Journey, Your Journey, Our Journey ........................................................................9
Planning is a Process ...................................................................................................10
The Planning Process .................................................................................................. 11
Importance of Planning ................................................................................................12
Why Planning is Important to You ................................................................................13
Starting Your Plans: Key Principles to Planning ...........................................................14
Explore Different Scenarios and Options .....................................................................15
Chapter Two: Worksheets to Guide Communication and Planning 17
This is Me and My Life .................................................................................................23
This is Me and Our Lives .............................................................................................24
Things or Activities That Bring Me Joy and Make Me Feel Good ................................25
Pieces of Our Plan .......................................................................................................27
Checklist of Daily Activities ...........................................................................................30
Circle of Support: Self-Assessment Checklist .............................................................38
Person-Centered Planning ...........................................................................................43
Employment: Finding the Right Job That Fits You (Me) ...............................................48
Training and Education: Before, During, and After High School .................................53
Job Coaching and Mentoring .......................................................................................56
Roommates: Making it Work ........................................................................................58
Emergency Network and Information ...........................................................................62
Assistive Technology ....................................................................................................67
Facing Transition and Change .....................................................................................69
The Meaning of Hope ...................................................................................................71
How I Face Transition and Change ..............................................................................72
Our Futures, Our Wishes | 5
Chapter Three: Important Considerations
75
ABLE Accounts.............................................................................................................76
Supported Decision Making .........................................................................................80
Guardianship: A Thoughtful Decision ...........................................................................83
Chapter Four: Relationships and the Human Connection
87
Voices of Individuals and the Family Members who Support Them ............................88
Proles of Individuals and Their Personal Journeys
Christopher and Cassandra ...................................................................................94
Dirk and Tracy ........................................................................................................96
Katie .......................................................................................................................99
Our Futures, Our Wishes | 76 | Our Futures, Our Wishes Our Futures, Our Wishes | 7
Introduction
Future Planning: A Roadmap of Our Futures, Our Wishes
Future Planning: A Roadmap of Our Futures, Our Wishes is a workbook
about how to facilitate future planning. This involves gathering information,
exploring choices, sharing dreams, documenting wishes, reaching goals,
and creating a written plan. It includes plans for the person with a disability
and for caregivers as their roles change over time. Future planning is
about how families and networks of support come together to support self-
determination, inclusion, integration, empowerment, and self-advocacy. This
roadmap is designed as a tool to be used by individuals with intellectual and
developmental disabilities, family members, direct support professionals, and
advocacy groups to guide the planning process.
Planning is a personal journey that involves decisions, choices, and risk-
taking. Some decisions will be easier than others and some will take more
time to complete. It involves thinking about what has worked, what needs to
change, and what experiences may inuence your choices. It is a journey
that is emotional, joyful, and sometimes overwhelming. There are many tasks
and decisions that need to be explored and completed. Most importantly, it is
person-centered and family-centered.
The creation of this Roadmap has had a journey of its own. It began in 2007
when families in Arizona shared their thoughts about future planning through
interviews and focus groups. In 2016
over 60 individuals with disabilities
and family members participated
in another future planning study.
This workbook is an outcome of
that study and has been made
possible with funding by the
Arizona Developmental Disabilities
Planning Council, and reects the
contributions from individuals with
disabilities, family members, direct
support providers and professionals
in the disability network.
Our Futures, Our Wishes | 7Our Futures, Our Wishes | 7
Chapter One
Future Planning: What is it all about?
8 | Our Futures, Our Wishes Our Futures, Our Wishes | 9
Think Future, Start Now
Future Planning Goals
Individuals and families often ask, “When should I or we start planning?” There
is no correct answer, but many families start to think about future plans when
major life transitions occur. Life transitions can be events such as moving to a
new neighborhood, changing schools, graduating from high school, getting a
job, changes in health, and the aging of parents and/or primary caregivers. The
Future Planning: A Roadmap of Our Futures, Our Wishes was developed to
help you move forward with the planning process. It was designed to meet the
following goals:
y Motivate everyone to start this discussion early
View planning as a process that keeps moving forward
Encourage the sharing of ideas, emotions, and plans
Integrate Person-Centered Thinking and Planning
Dream about possibilities
Support self-determination and self- advocacy
Formalize planning by writing things down
y
y
y
y
y
y
Many individuals and families talk about their future wishes and plans, but
struggle with taking it one step further. Begin by writing things down and expect
them to change. During the planning process you and others will learn more
about hopes, expectations, and what is necessary to accomplish your plan.
What are your goals?
Our Futures, Our Wishes | 9
My Journey, Your Journey, Our Journey
Key Principles to Planning
Future planning takes time so it’s never too early to start! Here are
key principles and values that individuals and families have taught us.
y Explore the wishes, desires, and goals that people with disabilities and their
families have. They may be similar, different, or overlap each other.
Talk openly about things and topics that can be difcult when thinking about
the future. Talking through things can help you nd solutions.
There are people who want to help but don’t know how. It’s okay to ask for
help.
Involve people in the community who can provide different types of support
and help now and in the future. Build your current and future networks and
friendships.
Think broadly about what it means to be involved, integrated, and included
in the community. These concepts can mean different things to individuals.
Dene and clarify them.
Learn about options and resources that may help. Resources are always
changing and evolving.
Get involved with community groups and organizations who can help you nd
the appropriate resources.
Allow the individual with a disability and his or her family time and permission
to share their emotions. This journey is not always easy.
Accept that some things will work and some will not, but you have to keep
trying.
Take one step at a time, even if it feels like you are standing still.
Keep a hopeful and positive “can do” attitude despite the challenges. The
meaning of “hope” and “success” can evolve along the way.
y
y
y
y
y
y
y
y
y
y
“Hang in there despite the challenges because good things will happen.”
10 | Our Futures, Our Wishes Our Futures, Our Wishes | 11
Planning is a Process
Based on our research, individuals with disabilities and families are in different
stages of their planning process. Many are “stuck” or have stopped planning for
various reasons. There will be times when your plan changes, and that is “okay.”
You will need different options and scenarios to think through.
There are different transition points in a person’s life, but each point can bring new
opportunities to communicate with each other about goals, wishes, and concerns.
At some point in the planning process, families have shared:
“I don’t know
where to start”
“I don’t know
how to start”
“I know I
have to do it”
“I have been
thinking about it”
“I don’t know
what will happen”
“I’ve
talked
about it”
“My children
will take over”
Our Futures, Our Wishes | 11
The Planning Process
Look through the Table of Contents to see the different topics. Some areas
may not apply to you or your family right now but they may in the future. You do
not have to complete every page or worksheet. Each worksheet was designed
for a specic purpose and developed to encourage you to write things down.
Writing is one way to communicate with others. The worksheets are also a way
to clarify expectations and to identify YOUR NEXT STEPS.
Getting Rea dy:
y Ask what area the person with a disability wants to explore rst. This will
engage everyone in the discussion.
Think about what area or topic may be the easiest or most comfortable to
complete. Decide what you want to do rst.
Think about what decisions need your attention now or soon. Prioritize your
tasks.
y
y
Getting Started:
y Find out what is important to other family members who will be involved in
providing care and support now and in the future.
Share the roadmap with someone who can review it with you. It can be one or
more individuals who can provide ideas and support.
Make a timeline for yourself. This timeline begins now and ends when you
have a written plan. You must update your plan regularly.
y
y
Keep the Momentum Going:
y Ask for help and support along the way.
Share your plan. Remember that it will change and evolve.
Revisit each decision or part of your plan regularly.
Schedule the same time each year to review your plan.
y
y
y
“Congratulate yourself on taking the rst steps to future planning – it’s a
necessary thing to do.”
12 | Our Futures, Our Wishes Our Futures, Our Wishes | 13
Importance of Planning
What are Your Triggers?
Future planning takes time and some things take practice. Give yourself and
the person with a disability permission to make changes and adapt the plan.
It can feel overwhelming at times, but the clearer the plan, the less can go
wrong.
The families we spoke to identified the following triggers, events, or changes
that motivated them to start planning:
y Aging of family members or primary caregivers
Health concerns, exhaustion, less energy
Life transitions such as:
y
y
y Graduation from school
College or continued skill development
Employment
Retirement
Military discharge/retirement
Moving to another community
y
y
y
y
y
y Changes in the family unit
Person with the disability communicates verbally or through behaviors his or
her desire to have more independence and autonomy
Another person or friend made his or her own plan
Siblings offered to get more involved or shared their concerns
y
y
y
What events made you decide that it was time to plan?
Why Planning Is Important To You
We all need to plan for our future. Think about the positive outcomes early planning
can have:
Gives the person with a disability time to identify what is important to him/her
Gives you/family time to identify how my/his/her wishes and goals can be
implemented
Allows the person with a disability to maintain a big role in decision making
Reduces confusion and chaos among other family members
Claries expectations and plans
Allows everyone to try new things and experience different opportunities
Gives everyone time to develop new skills
Allows people time to grieve and adapt to new realities
Why is planning important to you?
What are your benets to planning early or starting now?
What is holding you back?
Our Futures, Our Wishes | 13
y
y
y
y
y
y
y
y
Our Futures, Our Wishes | 1514 | Our Futures, Our Wishes Our Futures, Our Wishes | 15
Starting Your Plans
Key Principles to Planning
There are many different ways and strategies to develop a future plan. Here are
some key points to consider that may help you get you started.
There are many parts to a plan and many overlap each other. There are other
tools available for many of these areas so we will focus on the process of planning,
sharing of information, and how to be person-centered and family-centered. Family
is dened in many ways. It can include immediate family members, other relatives,
friends, and people or programs that provide support. It will be very important to
define “family” with the person with a disability. He or she may have a different or
special meaning of family.
Choices you make regarding one’s future can include areas about: decision-
making roles, education, employment, finances, health and wellness, home life,
and quality of life.
Get going by:
Redirecting your fears i nt o concrete planning
y If you are stuck, focus on the positive things in a person’s life
If the future is unclear, consider various scenarios and options
Don’t assume things will happen; the unknown may be worse
Think about it, talk about it, write about it
Use available resources, services, and supports
Understand what is holding you back from making plans
y
y
y
y
y
Things You Can Do:
y Start a journal; write down your thoughts and feelings
Use one of the worksheets in this Roadmap and start to write down your ideas
Identify the supports that are needed, including emotional, environmental, and
physical
y
y
Explore Different Scenarios and Options
Write them down
Option 1:
Option 2:
Option 3:
Our Futures, Our Wishes | 15Our Futures, Our Wishes | 15
16 | Our Futures, Our Wishes Our Futures, Our Wishes | 17
Let’s start planning
y Build your team. Find people who know you and support you
Let go and transfer some tasks and responsibilities to othersy
Things You Can Do:
Have a meeting with friends and family. Include the person with a disability as
much as possible
Start the discussion by sharing your ideas, concerns, and needs
Give everyone time to talk
Teach others what you know and what you hope they will learn more about
Ask for help and be as specic as you can
Receive help even if it’s a little uncomfortable
End the meeting on a positive note. Some suggestions include: talk about
the good things that are happening in each person’s life; share what you are
grateful for; share something you like about the person with a disability and be
sure to let him or her know!
y
y
y
y
y
y
y
Our Futures, Our Wishes | 17
Chapter Two
Worksheets to Guide
Communication and Planning
18 | Our Futures, Our Wishes Our Futures, Our Wishes | 19
Communication and Planning
Chapter Two is about engaging the person with a disability with important people
in his or her life during the planning process. It is about being person-centered
and family-centered. It involves taking one step at a time and moving forward. It
encourages people who provide support now and in the future to do their best to:
Redirect fears into concrete planning
y Learn about and get to know the person with a disability, understand his or her
dreams, and respect that person’s choices, desires, and goals.
y Identify and get the information that is needed to ensure a “quality of life” that
is dened by the person with a disability.
y Talk about the necessary and sometimes difcult topics.
y Use tools and strategies that will increase communication, clarify expectations,
and facilitate planning.
The worksheets in this chapter were created to serve as tools that can be reviewed
and completed by the individual with a disability, family members, and people or
programs that provide support. Even if the person with a disability and his or her
family have talked about or made plans for the future, the worksheets can provide
additional information when changes are needed. Each plan should be reviewed
at least yearly or on a regular schedule. For example, some families review their
plans on a specic holiday like a birthday. This becomes a shared responsibility.
Our Futures, Our Wishes | 19
Each Worksheet has a Focus and Purpose
This is Me and My Life (page 23)
This worksheet provides the person with a disability a way to share
important things about him or herself. It offers a chance to get to know
the person and invites others to join in on the conversation. It reects the
importance of understanding what makes each of us special.
This is Me and Our Lives (page 24)
Families want their loved ones with a disability to have a good quality of
life. This worksheet provides the individual and his or her family a chance
to share their views of what makes life meaningful. It provides future
caregivers information that increases their understanding about the choices
and experiences that are important to everyone.
Things or Activities That Bring Me Joy and Make Me Feel Good
(page 25)
This worksheet expands on the previous one. It provides more detail about
parts of a plan and each aspect of a person’s life. It shows that a “good life”
is a rich life. There are topics that are easier to talk about. This worksheet
provides a chance to explore and share areas that may need more attention
and planning.
Pieces of Our Plan (page 27)
Individuals and families know that future planning can be overwhelming
because it involves multiple decisions and tasks. This worksheet can help
to break down the task of planning into smaller sections or parts. It can
also serve as a checklist so that people involved in planning can see the
progress being made.
20 | Our Futures, Our Wishes Our Futures, Our Wishes | 21
Checklist of Daily Activities
(page 30 )
Caregiving roles can change over time. Sometimes the individual with
a disability is described as being more independent in one setting over
another. Family members or friends may underestimate what a person
can and wants to do for him or herself. New family members who may get
involved in helping with the day-to-day behaviors or new staff will need to
learn about a person’s abilities. This worksheet should be completed by or
with the individual with a disability as well as those who provide support. It
should be shared and discussed together after each person completes their
own worksheet. The goal is to support independence and identify strengths.
Circle of Support: Self-Assessment Checklist
(page 38)
Family members and friends who want to help may not know how. This
worksheet was created to serve as a self-assessment or strategy to
identify the types of support that can be provided. It can also help to
minimize conict and to clarify expectations. It was designed to open up
communication and increase collaboration among family members and
other important people in a person’s support network. The goals are to
identify strengths, individual comfort levels with different tasks, and the skills
and knowledge needed to participate in caregiving.
Person-Centered Planning
(page 43)
Person-centered thinking and planning is an important concept that
supports self-determination. It is a guided and systematic process that
identies the steps that make dreams a reality. It involves listening to verbal
expressions and observing the behaviors of persons with disabilities in order
to understand what is “important to” and “important for” them. It is a balance
and compromise between the two. This worksheet explains the person-
centered concept and provides examples. It lists questions that need to be
explored so that those involved with planning can understand and respect
the decisions and choices of the person with a disability.
Our Futures, Our Wishes | 21
Employment: Finding the Right Job That Fits Yo
u
(
M
e
)
(
p
a
g
e
4
8
)
Employment is an important activity that enhances individual lives. It
involves exploring the possibilities, identifying what denes a dream job,
and asking questions about the work environment. This worksheet was
designed to help the person with a disability and their supports to nd a job
that enhances their skills and abilities and makes work enjoyable.
Training and Education: Before, During, and After High School
(page 53)
Good relationships at work and at school improve team work. This
worksheet is an extension of the Employment worksheet and provides
strategies to create a positive learning environment at school and at work. It
encourages life-long learning.
Job Coaching and Mentoring
(page 56)
Job coaches play an important role. Coaches serve as mentors who guide
an individual in all aspects of his or her employment. They are sometimes
difcult to nd so it is important to work with a coach that you like. Good
communication with a coach or mentor is important. This worksheet
explores how an individual with a disability can work together with his or her
job coach.
Roommates: Making It Work
(page 58)
A person may move out of the family home and nd a roommate to share
their living environment and expenses. Finding a compatible roommate
requires getting to know a person’s habits and routines, communicating
expectations and preferences, working through conicts, reaching
compromises, and respecting different emotions. This worksheet will
walk you through different topics and things to explore with roommates or
potential roommates. It can serve as a way to clarify expectations and to
prevent potential disagreements.
Our Futures, Our Wishes | 2322 | Our Futures, Our Wishes Our Futures, Our Wishes | 23
Emergency Network and Information (page 62)
When things suddenly change or when there is an emergency, it is
necessary for other people to easily access information. This worksheet
serves as a place to write down important information about health care
providers, medications, and additional people to contact. Emergencies are
stressful so understanding how a person communicates with others can
often ease some of the anxiety during a difcult time. Use this worksheet as
a guide to facilitate communication.
Assistive Technology
(page 67)
Technology is useful, but not everyone knows what is available or how to
operate assistive technology. This worksheet is a resource that provides
examples and resources. It provides an opportunity to explain what is being
used and what can be explored in the future.
Facing Transition and Change (page 69)
Planning for the future is not easy. There is a lot of information to share with
others who will be involved in the life of the person with a disability. Future
Planning involves taking risks, exploring new experiences, and facing
difcult decisions about each person’s future. Change can be scary.
There are many benets to planning early. Remember to be exible
because plans will change. Caregivers also need to plan for their own
personal futures. This worksheet is designed to encourage family members
to be proactive by accepting help from others, reecting on the successes
of the past, focusing on the positive aspects in one’s life, and taking care
of their mental health. Change is inevitable and dening the meaning of
hope can be helpful. There is an opportunity to dene hope, identify one’s
creative energy, and acknowledge each person’s resilience. This worksheet
is an opportunity for reection.
This is Me
and My Life
My name is:
On this page, I will tell
you about ME. It shows
things I like, words that
I use, body movements
that show what I feel,
what I like to do, and
what makes me special.
I want to tell you what is
“important to me,
my family, and
my friends.”
You can write
something
on it too!
Our Futures, Our Wishes | 23Our Futures, Our Wishes | 23
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
___________________
24 | Our Futures, Our Wishes Our Futures, Our Wishes | 25
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
____________________________________________
This is Me
and Our
Lives
I am the ___________
of ________________
Here are some
examples of our life
together so you can
understand what is
important to us.
Use this information
to help ____________
continue to have a
good and meaningful
life where he/she
continues to be
surrounded
by people who
will support
him/her with
love and
respect.
Things or Activities
That Bring Me Joy and Make Me Feel Good
There are different parts of a person’s life. In the following boxes, write down things,
activities, or behaviors that make your life a “good life.” Fill in as many boxes as you
can. Talk about what you wrote down with people who know you now and people
who want to know more about you.
Our Futures, Our Wishes | 25
Where I Live
Where I Work or Spend a Lot of Time
My Health
26 | Our Futures, Our Wishes Our Futures, Our Wishes | 27
My Wellbeing: Fun and Good for Me
My Friends, Close Relationships
Money and Resources
Other
Pieces of Our Plan
Let’s start planning by looking at the choices I/We have.
Take a look at the things listed. You may not have to do or think about everything
on the list. Pick one section or area at a time and look at your choices. Check the
ones that apply to you, your family, and your support circle/network.
Places to Live
With Whom
Family
Relative
Friend
Paid Staff
Partner
Spouse
Other: _
Our Futures, Our Wishes | 27
o
________________
o
o
o
o
o
o
Where
o Family Home
o Apartment or own home
o
Foster Home
o Group Home
o Shared Living
o IDLA
o
Other: _________________
Shared Decision Making
o Myself
o POA: General
o POA: Health Care
o Representative Payee
o
Conservator
o Guardian
o
Shared
o Other:
_________________
Place to Work
o Part-time
o Full-time
o Retirement
o Other: _________________
28 | Our Futures, Our Wishes Our Futures, Our Wishes | 29
Pieces of Our Plan, continued...
Check the ones that apply to you, your family, and your support circle/network.
Education
o Part-time
o Full-time
o Community College
o
College
o Trade School
o
Other:
_________________
Social Activities
o Dance
o Singing
o
Sports
o Art
o
Music
o
Other: _________________
Health and Wellness
o Nutrition
o Exercise
o Preventive Care
o
Therapies
o Medication Management
o Oral Care
o Other: _________________
Money and Resources
o ABLE Account
o
Bill Paying
o Special Needs Trust
o
o
Saving
Budgeting
o Other:
_________________
Our Futures, Our Wishes | 29
Pieces of Our Plan, continued...
Check the ones that apply to you, your family, and your support circle/network.
Relationships
o Boy/girlfriend
o Dating
o Family Planning
o
Mariage
o Other: _________________
Transportation
o Bicycle
o Bus
o Van Service
o Car
o
Other: _________________
Daily Activities
o Grooming
o Bathing
o Cooking
o
Eating
o Housework
o Grocery Shopping
o Other Shopping
o Other: _________________
30 | Our Futures, Our Wishes Our Futures, Our Wishes | 31
Checklist of Daily Activities
This checklist has many of our daily activities. It includes
both simple and more difcult behaviors. Not all the
activities may apply to you and where you live. This
checklist is useful when you talk about what “You”
(individual) can do and how much support is needed to live
more independently. You can work on it separately at rst.
It is best to share and talk about it with family, friends, and
people who provide help and support.
Here is a description of what the words mean.
y Can Do It Alone: “I” (Individual) can do it without any
cues or direction. If I live alone, I do not need any
assistance. I may not complete the task like others
would, but I can do it safely alone.
Need Some Help: “I” (Individual) need cues,
reminders, or guidance. Guidance means that I may
need help getting started but can complete more than
half or 50% of the behavior by myself.
Need a Lot of Help: “I” (Individual) need another
person with me to complete the task or behavior. If
alone, he/she is not able to start and nish. It is not
safe for the person to try it themselves.
y
y
How to Complete:
Place a “mark” in the
box that best describes
the person’s abilities.
You can make copies
and share it with your
family and others to see
if they agree.
Our Futures, Our Wishes | 31
Behavior or Task
Can do Alone Need Some Help Need a lot of Help
PERSONAL HYGIENE
Find and use the right soap
Wash his/her face
Blow one’s nose with tissue
Put toothpaste on toothbrush
Use oss for teeth
Brush his/her teeth
Comb his/her hair
Rinse his/her mouth
Fill a tub with warm water
Take a shower
Use shave cream and razor
Shave face or body hair
Find the bathroom
Urinate
Have a bowel movement
Clean body after using bathroom
Other Activities/Behaviors:
The support or assistance that would be helpful:
32 | Our Futures, Our Wishes Our Futures, Our Wishes | 33
Behavior or Task
Can do Alone Need Some Help Need a lot of Help
FOOD PREPARATION & EATING
Get the plates and utensils
Eat with a spoon or fork
Cut food with a knife
Pour a drink into a cup
Make a simple meal
without the stove (like sandwich)
Heat food in a microwave
Turn stove On and Off
Make scrambled eggs or similar meal
Clean the table or eating area
Put dishes in sink or dishwasher
Wash dishes
Other Activities/Behaviors:
The support or assistance that would be helpful:
Our Futures, Our Wishes | 33
Behavior or Task
Can do Alone Need Some Help Need a lot of Help
CLEANING SKILLS
Put trash in wastebasket
Take out the trash
Wipe off the table and countertops
Make the bed
Put dirty clothes into hamper
Use washer and dryer to clean
clothes
Hang clothes outside to dry
Vacuum the rug or oor
Sweep the oor
Clean the toilet
Scrub the tub
Other Activities/Behaviors:
The support or assistance that would be helpful:
34 | Our Futures, Our Wishes Our Futures, Our Wishes | 35
Behavior or Task
Can do Alone Need Some Help Need a lot of Help
SHOPPING AND FINANCES
Know how to pay with money
Know how to count money
Can count change
Make a shopping list
Know about food groups
Choose foods that are healthy
Push a grocery cart
Know the size of clothes
Know when to ask for help
Can make a budget
Can pay bills on time
Other Activities/Behaviors:
The support or assistance that would be helpful:
Our Futures, Our Wishes | 35
Behavior or Task
Can do Alone Need Some Help Need a lot of Help
COMMUNICATION
Use technology to communicate
Talk using short sentences
Use sign language
Use email
Use the phone
Write a letter or note
Take part in an online community
(social media like Facebook)
Call friends to do something
together
Request help by dialing “911”
Other Activities/Behaviors:
The support or assistance that would be helpful:
36 | Our Futures, Our Wishes Our Futures, Our Wishes | 37
Behavior or Task
Can do Alone Need Some Help Need a lot of Help
SOCIAL ACTIVITIES
Go to restaurants
Go to movies, plays, concerts
Go to church, mosque,
synagogue, or temple
Play sports
Do volunteer work
Work at a paying job
Walk around the block
Go to exercise class
Do exercise at home
Go to dances
Go swimming
Other Activities/Behaviors:
The support or assistance that would be helpful:
Our Futures, Our Wishes | 37
Behavior or Task
Can do Alone Need Some Help Need a lot of Help
TRANSPORTATION
Walk independently
Use a manual wheelchair
Use a motorized wheelchair
Ride in a car
Ride in a van
Ride the public bus system
Read the bus schedule
Call for a ride
Fly in an airplane
Other Activities/Behaviors:
The support or assistance that would be helpful:
38 | Our Futures, Our Wishes Our Futures, Our Wishes | 39
Circle of Support
Self-Assessment Checklist
This checklist is for siblings, relatives, friends, and other
people who give direct care and support to the person with
a disability. There are a lot of different ways to provide
support and each way is valuable.
This checklist was designed to open up communication
and increase collaboration among family members and
individuals in the network of support. The goals are to
identify strengths, individual comfort levels with different
tasks, and the skills and knowledge needed to participate
in caregiving. Fill out the form by yourself and then share it
with each other or those in the “circle of support.”
For each behavior/
task, think about what
you need to do or have
before you can help out
and write it down in the
space provided.
For example:
1. Do you need to learn
something about the
person?
2. Do you have all the
information you need
to help?
3. Do you have to change
something in your
life before you can
help (move, retire, or
something else)?
I can provide this much help and support with the following:
Our Futures, Our Wishes | 39
Behavior or Task None Some A Lot To do this, I need to:
Advocacy: Support Self
Advocacy for the individual
Advocacy: Help with
Systems and Benets
Companionship: Provide
Respite or a Break
Emotional Support: Be
there to listen, provide
input, provide comfort
Find Services and
Resources
Friendship: Be available
Friendship: To give and
to receive
Friendship: Do things
together
40 | Our Futures, Our Wishes Our Futures, Our Wishes | 41
I can provide this much help and support with the following:
Behavior or Task None Some A Lot To do this, I need to:
Hands on Assistance
• Bathing
• Feeding
• Dressing
• Transfer
• Grooming & Hygiene
Housework
Cooking: Meal Preparation
Coordination
• Medical Care
• Therapies
• Social Activities
• Transportation
• Other:
Our Futures, Our Wishes | 41
I can provide this much help and support with the following:
Behavior or Task None Some A Lot To do this, I need to:
Medication Management
Career/Employment
Exploration
Financial
• Provide money
•
Budget money
Relationships
• Develop Relationships
• Teach Intimacy Skills
• Talk about Sexuality
Our Futures, Our Wishes | 4342 | Our Futures, Our Wishes Our Futures, Our Wishes | 43
•
I can provide this much help and support with the following:
Behavior or Task None Some A Lot To do this, I need to:
Legal Role
• Healthcare POA
• General POA
• Payee
• Conservator
• Supportive Decision Maker
• Guardian
Other:
Our Futures, Our Wishes | 43Our Futures, Our Wishes | 43
Person-Centered Planning
Important to and Important for
Everyone has dreams and hopes throughout their life.
Dreams and hopes may change depending on our age, life
experiences, how we spend our time, what we see others
do, and how we interact with others. Dreams and
hopes help us reach our potential. They can help us
understand our goals and how we get there. Sharing
our dreams and hopes helps us plan for our
futures.
Person-centered planning is a guided,
systematic process that helps people
identify the steps to make their dreams a
reality. A full range of options for successful
adult living is explored in partnership with
important people in a person’s life. Topics may
include creating a vision for the future, employment, education,
relationships, recreation, health and wellness.
One important piece of this planning process is to understand
what is “important to” the person with a disability. There are also
things that are “important for” the person. We must nd a balance
between the two.
The following worksheets (pages 45 and 46) are one way to help you explore
and talk about the difference between what is important to the person and
what is important for the person. Things that are important to the person
include his or her hopes and dreams, likes and dislikes, places that are
important, and special interests. At the same time, you will also identify what is
important for the person, such as what is needed to ensure her/his health and
safety and what will help him or her be a valued member in the
community.
Our Futures, Our Wishes | 4544 | Our Futures, Our Wishes Our Futures, Our Wishes | 45
Important To:
Includes only what the individual is “saying”
with words and behaviors. We can listen to
the behavior when words and behaviors are
in conict.
Example: Sally loves motorcycles because
her dad and uncle have one. Plans are
made so Sally can go on periodic rides.
Example: Mohammed likes using his
computer and wants to work at a store that
sells computers. Mohammed and his family
talk about how he will develop the skills
necessary for this job.
Important For:
Includes only things that other people keep
in mind when thinking about how to make
sure that someone is safe and healthy.
Includes what others see as important to
help the person be a valued member of
their community.
Example: Manuel has a job interview with a
new company. You take him shopping and
he chooses a pair of shorts and a t-shirt
with his favorite musical band on the front.
He likes this t-shirt because it is comfortable
and colorful. You share with Manuel that
he can choose a dress shirt and long pants
that he can wear to the job interview and to
church. This way he can wear the top and
bottom on more than one occasion. You tell
him that it ts nicely and other people may
like it too.
Example: Nicky is looking for an apartment
and found one that is close to her favorite
restaurant. The streets by the apartment
do not have good lighting and there is no
close bus stop. You talk about looking for
another place in a safer neighborhood that
is close to a bus stop. It may not be near
her favorite restaurant but it is close to
another restaurant that is similar to the one
she likes.
Contributions for Person-Centered Thinking from
Sonoran UCEDD staff: Jacy Farkas, MS, and
Melissa Kushner, MSW.
Important To and Important For
Important To:
Our Futures, Our Wishes | 45Our Futures, Our Wishes | 45
______________________________ ______________________________
What hopes, dreams, likes,
dislikes, places, and special
interests are important?
Important For:
What is needed to ensure health
and safety and become a valued
member of the community?
© The Learning Community for Person Centered Practices, Inc. 2008
Our Futures, Our Wishes | 4746 | Our Futures, Our Wishes Our Futures, Our Wishes | 47
Important To and Important For
Next Steps
Sometimes what is important to the person does not always
match what is important for them. Here are some questions to
think about and share with each other. Involve other people that
play important and supportive roles.
How do we know what is important to the person?
How does ___________ express him or herself through words or behaviors?
Finding a balance between “Important To” and “Important For” requires tradeoffs. What
are we willing to give up?
What information do we need to make informed choices?
What experiences do we need to explore or try in order to identify what may be a risk?
Our Futures, Our Wishes | 47Our Futures, Our Wishes | 47
Resources
Person Centered Planning
Person-Centered Planning: Pathways to Your Future – A toolkit for anyone
interested in Person-Centered Planning (English and Spanish).
http://sonoranucedd.fcm.arizona.edu/publications/303
My Interests, Hopes, and Dreams: An Exploration Tool and Guide to My
Personal Preferences (English and Spanish).
http://sonoranucedd.fcm.arizona.edu/publications/305
The Learning Community for Person Centered Practices
http://www.learningcommunity.us/intro.htm
Helen Sanderson Associates: Person-Centred Practices, Sorting Important
To/For
http://helensandersonassociates.co.uk/person-centred-practice/person-
centred-thinking-tools/sorting-important-tofor/
48 | Our Futures, Our Wishes Our Futures, Our Wishes | 49
Employment
Finding the Right Job That Fits You (Me)
Exploring the Possibilities
A discussion about the following topics may be helpful in
knowing where to look, how to prepare for the job, and
what steps can be taken to make a plan of action. Talk
about these things with the individual with a disability,
family, friends, and other important people in one’s life.
• What is a job?
• Why do people work?
• Why do you want to work?
• What are some jobs you know about?
• What kind of work do people do on these jobs?
• What jobs do your family and friends have?
• What do they like about their jobs?
• How did they prepare for their jobs?
• What hobbies do you have that can help you get
a job?
It is hard to know what a job is really like until you see
others do it or do it yourself. Look for opportunities to:
a) Volunteer at the job site or a similar place
b) Try it for a short period of time like a summer job
c) Shadow or follow someone at the work site
d) Visit several times with a mentor or coach who
can explain how things work
Finding a job
involves many
steps. Here are
things to do as
you and your
family prepare
to nd a job that
“ts” well with
your abilities and
your interests.
Our Futures, Our Wishes | 49
Your Dream Job
What kind of job do you want? What do you dream about doing?
What type of work setting does the individual or “I” want to try? (check the boxes)
A place where:
o Few or not too many people work (small business or employer)
o A lot of people work (big business or employer)
o Everyone moves fast or works fast
o Everyone moves slower and works carefully
o People work alone
o People work in a team
o People stay indoors
o People stay outdoors
o People work with their hands or with tools
o People use computers or machines
o People use their minds to solve problems
o People stay both indoors and outdoors
o People hang out together during lunch or after work
o There is a lot of contact with other workers or people
o There is not too much contact with other workers or people
o There is a lot of noise or different sounds (speakers, music, machines, etc.)
o It is quiet and peaceful (not many sounds or talking)
o Food is provided
o Parking is there for my bike, motorcycle, or car
Our Futures, Our Wishes | 5150 | Our Futures, Our Wishes Our Futures, Our Wishes | 51
Things to Think About
How many hours a week do you (I) want to work? Think about the time and energy you
have to do the other things you enjoy. Here are some questions to ask yourself.
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
Questions
1. Can you work and still participate in
exercise, sports, visiting friends and
do hobbies?
2. Is your job close to where you live
so it won’t take too much time to get
there?
3. Is there easy and accessible
transportation?
4. Is transportation reliable and on
time?
5. How much energy do I have after I
work?
Write down your thoughts
Our Futures, Our Wishes | 51Our Futures, Our Wishes | 51
Getting Started
Now is the time to look at the person’s (My) abilities and skills. There may be other skills
that are needed before I get my dream job. Complete the following sentences.
Other people tell me I would be good at doing:
1. _____________________________________________
2. _____________________________________________
3. _____________________________________________
4. _____________________________________________
I feel I am good at doing:
1. _____________________________________________
2. _____________________________________________
3. _____________________________________________
4. _____________________________________________
I feel happiest when I can:
1. _____________________________________________
2. _____________________________________________
3. _____________________________________________
4. _____________________________________________
I need more practice doing:
1. _____________________________________________
2. _____________________________________________
3. _____________________________________________
4. _____________________________________________
Write down other
thoughts
____________________
____________________
____________________
____________________
____________________
____________________
____________________
____________________
____________________
____________________
____________________
____________________
____________________
____________________
____________________
Our Futures, Our Wishes | 5352 | Our Futures, Our Wishes Our Futures, Our Wishes | 53
Finding The Right Fit
How do I know if this job is the right t? When you rst start a new job, it may not
be as much fun as you would like. Give it a good effort and see what happens.
You Can Ask
1. Do you like to go to work?
2. Do you like seeing the people
there?
3. Are your supervisors (boss) nice to
you?
4. Are you learning new things?
5. Do you feel like they enjoy seeing
you?
6. Do you get the supports needed to
do your job well?
Write down your thoughts
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
Our Futures, Our Wishes | 53Our Futures, Our Wishes | 53
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
Training and Education
Before, During, and After High School
In school and at work, relationships are important.
Everyone must work on getting along so that you can work
together as a team. Some jobs need people to work alone
and some jobs need people to work with others. Look at
the following examples and think about how relationships
can be improved in school and at work.
In school, did you get along well with your classmates?
What needs to happen so everyone gets along better?
What can be changed or done differently to make any
experience, school, or work place better?
What can you do to make it better?
What can others do to make it better?
•
•
•
•
•
What skills can
(or did) the person
(you) develop in
school?
Middle school
High school
College
Technical school
Other educational
programs
54 | Our Futures, Our Wishes Our Futures, Our Wishes | 55
Useful Strategies
Continue to Learn New Things
Think about what other courses or classes you need to
reach your career goals. There may be skills you need
to have before you get into those courses too. Some
courses provide information while some provide hands on
experience.
Make a list of what you want to learn and how you will
learn them.
_______________________________________________
_______________________________________________
_______________________________________________
Make your plan.
_______________________________________________
_______________________________________________
_______________________________________________
Work skills can also be learned at a Career and Technology
Education Center, two-year college, and four-year
University. Talk with a school counselor, people who
graduated from that program or school, or the place you
want to work.
1. Ask what it will take to get a job and what courses will
provide that information and skills.
2. Ask the educational program if they provide or help
with job placement and support.
3. Ask if there is an apprenticeship program.
Talk with a school
counselor, people
who graduated
from that program
or school, or the
place you want
to work. Ask
what it will take
to get a job and
what courses
will provide that
information and
skills.
You Have a Job!
Our Futures, Our Wishes | 55
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
It’s a great feeling to have a job. Be patient because it takes
time to feel very comfortable in a new job. Think about what
you need to be successful. Your job should also be fun and
exciting.
We all learn differently.
Tell your coworkers and your boss how you learn.
Some people need to:
• Repeat the task over and over
• See and follow pictures
• Write down the steps
• Hear a recording of what they need to do
• Watch others do it rst
All of these ways are useful strategies. You may also think
of other ways that help the individual (You, Me) learn.
Be patient
because
it takes
time to feel
comfortable in
a new job.
56 | Our Futures, Our Wishes Our Futures, Our Wishes | 57
Job Coaching and Mentoring
Look for a Job Coach or Mentor
Talk with your support coordinator or Vocational
Rehabilitation program staff about nding a job coach.
Some of this is paid for or you may need to nd a
volunteer or friend. Also talk and work with advocacy
groups, independent living centers, The Arc, and other
organizations to nd out what is available. The employee
is the person who just got a job. The employer is the
person who hired the person for the job. Communicate
clearly what is expected from the job coach and when
they are no longer needed.
In some cases
Coaching and
Mentoring may
be paid for
OR
you may
need to nd a
volunteer or
friend.
Contributions for Employment, Training and Education, Job
Coaching and Mentoring from Sonoran UCEDD staff:
Susan Voirol, MSW, Laura Schweers, BS, Melissa Kushner, MSW.
Our Futures, Our Wishes | 57
Questions To Ask Your Job Coach
Ask if he or she can help with all or some of the following:
o Help nd natural supports at the job site to assist the
employee
o Help clarify and understand job responsibilities and
employer expectations
o Identify how the environment can change or adapt to
support the employee
o Develop a sense of belonging among other employees
and the job site
o Find ways to integrate and include the employee in job
related social activities. Develop social connections
o Look for ways to increase safety on the job site
o Translate or explain in simpler language the culture of
the organization or job site
o Ensure that appropriate job training is provided
o Serve as a resource nder
o Provide encouragement and emotional support
o Check in with the employee to see how things are going
and what is needed to move forward
o Encourage employee to get feedback from boss or
supervisor
o Practice positive ways to communicate with others
o Help look for assisted technology that may help make
the job easier or more comfortable
o Provide prompting or cues at the job site until they are
not needed anymore
o Work with the employee so that the job coach or mentor
slowly does less and less
Communicate
clearly what is
expected from
the job coach
and when they
are no longer
needed.
Our Futures, Our Wishes | 5958 | Our Futures, Our Wishes Our Futures, Our Wishes | 59
Roommates
Making it Work
Having a roommate can make life happier or it can
make it very frustrating. This worksheet lists things
you can think about as you look for a roommate
or roommates to help assure that you will nd a
compatible match.
You will hear many say that “communication is
key.” Look at ways to make communication easier
and clearer. This means nding ways to make the
other person feel like they can speak openly about
what is on their mind. Open communication and
sharing ideas will help roommates get along better.
Find ways to allow your roommate to relax and be
thoughtful about what you can do to help. If you don’t
know just ask.
Are there habits that annoy you or annoy your
roommate? Talk about things that bother you
right away and don’t wait until you get more upset
because it happens over and over again. Good
communication goes a long way when living with
someone and making it work well.
On the following pages are some suggestions of
things to think about that can help roommates
interact with each other in a more positive and
successful way. By considering these questions you
will learn a lot about yourself and your roommate.
This is important for the success of living together in
harmony.
Good communication
with your roommate
will help to promote
a more comfortable
living arrangement.
• Be willing and open to
hear suggestions and
accept criticism
• Communicate
openly from the very
beginning
• Be willing to talk about
things that might be
uncomfortable
• Remain calm when
having a difcult
conversation
Things to Think About
Our Futures, Our Wishes | 59Our Futures, Our Wishes | 59
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
Use of Space
• Be reasonable when space is limited
• How much of your belongings or
things will t in the space you will
have?
• Give your roommates enough space
so that you don’t get in the way of
their daily routine
• Be as neat as you can
• How will cleaning chores be shared?
• How would you like to decorate your
space?
Daily Routine and Lifestyle
• How much social activity do you
enjoy?
• Do you like to have people over? If
so how often and for how long?
• How much time do you spend at
home?
• What type of activities do you enjoy
doing at home and how often?
• How much quiet time do you need?
• How do you like to use your quiet
time?
Write down your thoughts
Things to Think About
Sleep Patterns
• Do you go to sleep early and get up
early?
• Do you go to bed late and wake up
late?
• Are you a light sleeper who wakes up
easily or needs earplugs to sleep?
• Are you a heavy sleeper?
• What kind of alarm do you use to
get up in the morning? Do you need
more than one alarm?
Eating Habits
• Do you prefer to eat alone or with
someone?
• Who cleans up after eating?
• Do you eat three meals a day?
• What kinds of snacks do you enjoy?
• Is food shared or bought and eaten
separately? If shared:
• How will the cost be shared?
• Who will do the shopping?
• Who will decide what to buy?
Write down your thoughts
Our Futures, Our Wishes | 6160 | Our Futures, Our Wishes Our Futures, Our Wishes | 61
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
________________________
_______________________________
Our Futures, Our Wishes | 61Our Futures, Our Wishes | 61
After you have
thought about your
own habits, patterns
and lifestyle,
consider writing
down important
topics to you that
you would like
to talk about to
current or potential
roommate(s).
Other Considerations
• Some people like roommate agreements as a way to
talk about boundaries and expectations
• Who needs to be involved in the discussion about
choosing roommates, responsibilities, and how space
will be shared?
• How often will agreements be reviewed for changes
• What does compromise mean
• Don’t expect your roommate to change every part of their
lifestyle or daily routine
Being Understanding of Emotions
Everyone has stress in his or her life at one time or
another. When people are stressed or feeling anxious
or have something on their mind that is bothering them
they may act in a different way. It can be very helpful
when roommates can notice and understand when their
roommate is upset or having a bad day.
When people are having a bad day or don’t feel good they
can also withdraw or want to stay by themselves. They can
do this by getting quiet, by moving to a different corner of
their space, or not talking or interacting with others. When
this happens it is helpful to know what they want you to do
or not do. Knowing these things about your roommate in
advance will help everyone to get through what might be a
hard time for someone.
Adapted from Melinda Delkic’s “Learn from my mistakes and avoid these
common roommate problems” in The New York Times, August 2, 2017.
Enhanced with ideas from individuals with disabilities and their families.
62 | Our Futures, Our Wishes Our Futures, Our Wishes | 63
Emergency Network and Information
This list contains names, phone numbers, and information
that are helpful in a new situation or an emergency.
In an emergency or sudden change, the following
information can minimize stress or clarify the next steps.
Name of Person Who Needs Support:
_______________________________________________
Nickname or Preferred Name: _______________________
First Person to Call in an Emergency:
_______________________________________________
Primary Care Provider
Physician _______________________________________
Phone _________________________________________
Nurse
__________________________________________
Phone
_________________________________________
Other (name)
___________________________________
Phone _________________________________________
Pharmacy
Name __________________________________________
Address
________________________________________
Phone
_________________________________________
_______________________________________
_______________________________________________
Allergies
Complete this
form and leave it
in a plastic bag
in a location that
is easily seen
or accessible.
Options include
taping it to the
refrigerator or
putting it in
the freezer in a
plastic bag.
Our Futures, Our Wishes | 63
Medications:
Name, Dosage, Frequency (with or without food)
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
Supplements:
Name, Dosage, Frequency
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
Other health care providers who are involved:
(list their contact number)
Counselor or Therapist
_____________________________________________________
Support Coordinator
_______________________________________________________
Case Manager ____________________________________________________________
Social Worker ____________________________________________________________
Occupational Therapist
_____________________________________________________
Physical Therapist _________________________________________________________
Speech Therapist _________________________________________________________
Rehabilitation Professional
__________________________________________________
64 | Our Futures, Our Wishes Our Futures, Our Wishes | 65
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
Other Individuals To Call
Name Contact Information Relationship and
Information or Support
They Can Provide
Additional Useful Information:
Our Futures, Our Wishes | 65
Helpful Communication Strategies
New situations or sudden changes can be stressful for everyone. Write down and
share what you and your loved one with a disability can teach others in hopes of clear
communication and support during a stressful event.
What would you like others to know when your loved one with a disability:
Faces a sudden change: ___________________________________________________
_______________________________________________________________________
Meets someone new:
_____________________________________________________
_______________________________________________________________________
Finds him or herself in a new situation:
________________________________________
_______________________________________________________________________
Does a particular task:
____________________________________________________
_______________________________________________________________________
Wants to share an idea:
____________________________________________________
_______________________________________________________________________
Wants to express an emotion:
_______________________________________________
_______________________________________________________________________
In other situations?
_______________________________________________________
_______________________________________________________
_______________________________________________________
________________
________________
66 | Our Futures, Our Wishes Our Futures, Our Wishes | 67
Describe and explain what some common behaviors or gestures can mean and
how to communicate and respond in a supportive way.
What others should know about helpful communication strategies:
1. Behavioral Communication: behaviors, gestures, or physical movements that are
used to communicate wishes, wants, and emotions:
_______________________________________________________________________
_______________________________________________________________________
Ways to Respond:
_______________________________________________________
________________________________________________________
________________________________________________________
_______________
_______________
2. Verbal Communication: words, sounds, use of voice, use of body with language:
_______________________________________________________________________
_______________________________________________________________________
Ways to Respond:
________________________________________________________
________________________________________________________
________________________________________________________
_______________
_______________
3.Manual signs: writing, drawing:
_______________________________________________________________________
_______________________________________________________________________
Ways to respond:
_________________________________________________________
_______________________________________________________________________
_______________________________________________________________________
Our Futures, Our Wishes | 67
Assistive Technology
Assistive technology (AT) is any item, type of equipment, software program,
or product system that is used to increase, maintain, or improve the functional
capabilities of persons with disabilities. [
Reference: ATiA at https://www.atia.org/at-
resources/what-is-at/ (accessed 6/30/18)]
Examples of
assistive technology (AT)
are:
y Low-tech: communication boards
High tech: special-purpose computers
Hardware: prosthetics, positioning devices
Software: screen readers and
communication programs
Inclusive or specialized learning materials
and curriculum aids
Mobility aids: wheelchair, walker, braces,
power lifts
y
y
y
y
y
Finding the right AT is a team effort. The following organizations can
provide additional information.
y AOTA, American Occupational Therapy Association
ASHA, American Speech-Language-Hearing Association
CEC, Council for Exceptional Children
LDA, Learning Disability Association of America
RESNA, Rehabilitation Engineering & Assistive Technology Society of North
America
y
y
y
y
68 | Our Futures, Our Wishes Our Futures, Our Wishes | 69
List all the assistive technology (AT) being used
______________________________________________________
______________________________________________________
______________________________________________________
______________________________________________________
Technology Used Describe How it is Used
Identify what AT can be explored in the future.
Our Futures, Our Wishes | 69
Facing Transition and Change
Change is part of life
Change happens whether
we like it or not. Sometimes
change and transition can
be more difcult for family
members when it’s about
planning for their futures.
This section is designed
to help us look at how we
adjusted to past transitions
in hopes of preparing us for
the next one.
During life’s many
transitions we are faced
with options and choices.
Some decisions are
clear and some are not.
Future planning can be
a daunting and difcult
conversation. We can
choose to “not plan” or to
design a plan based on
thoughtful conversations
and decisions. Caregivers
expressed that there are
many unknowns that made
them and their family
member feel vulnerable.
This section provides some
tips on how to face change
and transition and to learn
from past experiences.
Possible ways to deal with change and look
toward the future.
1. Recognize that some parts of future planning
decisions may be more difcult than others. Feeling
anxious, sad, eager, along with having feelings of
joy and relief are okay.
2. Place more emphasis on the positive emotions.
Don’t focus on just one emotion or feeling.
3. Identify how you have managed change before and
focus on what made you successful.
4. Focus on the things that you have control over
and what can have a positive impact on everyone.
Don’t focus too much on the “what ifs.” There are
too many of them. Open communication will be an
important part of this process.
5. Find new opportunities and be proactive. This
includes trying new things, exploring other talents
and interests, and expanding your network of
support. Also remember to expand the network of
support for the individual with a disability. The goal
is to engage a variety of supports and people in the
future. The more eyes and ears, the better.
6. Take time to replenish your body, your mind, and
your spirit. Use respite services that are offered by
friends, family, and programs. Say “yes” more often
than “no.”
7. Ask for help when you need it. People may not
know how to help so you need to tell them exactly
what they can do or provide. Be concrete and give
clear instructions.
70 | Our Futures, Our Wishes Our Futures, Our Wishes | 71
8. Try new ways to lessen your anxiety and fears. Explore
complementary medical modalities, meditation, prayer,
or other creative expressions.
9. Be open to hearing suggestions and ask others to be
honest and open with you.
10. Remain hopeful. Hope comes in many forms.
11. Be nice to yourself. Remember that you are doing the
best that you can.
Resources:
1. NAMI: National Alliance on Mental Illness. Phone: 800-
950-6264. https://www.nami.org/#
2. Substance Abuse and Mental Health Services
Administration (SAMHSA). 1-800-662-HELP (4357).
https://ndtreatment.samhsa.gov
3. National Suicide Prevention Lifeline: 1-800-273-TALK
(8255) https://suicidepreventionlifeline.org
4. National Association of Area Agencies on Aging:
https://www.n4a.org/about
This list was inspired by 10 Tips for Easing
the Stress of Transition and Change, by
Ann Smith in Psychology Today (posted
May 19, 2015).
Most important,
if you feel stuck,
alone, or sad,
and are not able
to move forward
- nd a friend,
condant, or a
professional who
can help.
Our Futures, Our Wishes | 71
The Meaning of Hope
We all need “hope” in our lives. Our denition of hope can
change when we face new experiences, challenges, and
transitions. It is important to understand that hope can be
dened in many different ways. Having hope is a good
thing. Answer the following question for you and for your
loved one with the disability.
I dene hope as:
_________________________________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
I hope for:
______________________________________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
Together, we hope for:
_____________________________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
Our denition of
hope can change
when we face
new experiences,
challenges, and
transitions. If you
feel stuck, alone,
or sad, and are
not able to move
forward - nd a
friend, condant,
or a professional
who can help.
72 | Our Futures, Our Wishes Our Futures, Our Wishes | 73
How I Face Transition and Change
Now is the time
to look at how
you are dealing
with change and
transition. You
have faced other
situations that were
challenging and
emotional in the
past so let’s look at
the positive ways
to move forward.
Identify past changes or transitions you have faced.
What would you do different? _____________________
_____________________________________________
_____________________________________________
What worked? _________________________________
_____________________________________________
_____________________________________________
How might your experience with past changes/transitions
apply to future planning? _________________________
_____________________________________________
_____________________________________________
What emotions did you feel?
______________________
_____________________________________________
How did you remain positive? _____________________
_____________________________________________
How did you keep yourself motivated if you found yourself
discouraged or roadblocked? _____________________
_____________________________________________
_____________________________________________
How were you successful in the past? What did you focus
on?__________________________________________
_____________________________________________
Our Futures, Our Wishes | 73
Thinking about current changes or transitions.
What would you like to try this time? __________________
_______________________________________________
_______________________________________________
_______________________________________________
How can we make this experience successful?
_________
_______________________________________________
_______________________________________________
My steps to take:
1. _____________________________________________
2. _____________________________________________
3. _____________________________________________
4. _____________________________________________
What kinds of help would be useful?
Physical
Emotional
Spiritual
Legal
Financial
Other
___________________
Suggestions other people have shared with me:
________
_______________________________________________
_______________________________________________
Additional information I need:
Community Integration
Employment
Financial Planning
Living Arrangements
Quality of Life
Legal Options
Support Networks
My Creative Side
How I express and
share my creative
energy:
____________________
____________________
____________________
____________________
____________________
____________________
____________________
____________________
____________________
____________________
____________________
____________________
____________________
____________________
____________________
____________________
____________________
Our Futures, Our Wishes | 75
Our Futures, Our Wishes | 75
Chapter Three
Important Considerations
76 | Our Futures, Our Wishes Our Futures, Our Wishes | 77
ABLE Accounts
Information about Setting Up Your Account
An Achieving a Better Life Experience (ABLE) account
can be created as a result of the passage of the Stephen
Beck Jr. Achieving a Better Life Experience Act of 2014
(ABLE Act). It is a type of tax-advantaged savings account
that a person with a disability, also known as the beneciary
and account owner, can use to pay for disability-related
expenses. Each person can create one ABLE account. To
be eligible, the person with the disability must meet the
following criteria:
y Onset of disability or blindness began before age 26
y Person is eligible for SSI, Medicaid, and other public
benets
y If person is not receiving SSI and or SSDI, but still
meets the age of onset disability requirement, he/
she could still be eligible. The individual must meet
the Social Security’s denition and criteria regarding
signicant functional limitations. Person must also
obtain a letter of certication regarding functional
limitations from a licensed physician.
An ABLE
program can
be established
by a State (or
State agency or
instrumentality
of a State). An
eligible individual
can open an
ABLE account
through the ABLE
program in any
State, if the State
permits it.
Our Futures, Our Wishes | 77
Some States
formed
partnerships to
improve access for
eligible individuals
to enroll in
ABLE programs.
You may see
different types
of arrangements
between States
administering
ABLE programs.
Anyone can make contributions to the account (like family
and friends) and contributions must be made with post-
taxed dollars. Check your state regarding tax deductible
contributions. The total annual contribution for a single
year (2018) is $15,000. This amount may be adjusted for
ination. The total limit in the ABLE account is determined
by the individual state and the current government
benets the individual is receiving. For example, a
beneciary’s SSI cash benet would be suspended if
their ABLE account exceeds $100,000. See http://www.
ablenrc.org/about/what-are-able-accounts for more
details.
Additional information on the following topics is available
from the Social Security Program Operations Manual
System (POMS) at: https://secure.ssa.gov/poms.nsf/
lnx/0501130740 (accessed June 2018).
y When to exclude ABLE account contributions,
balances, earnings, and distributions
When to count ABLE account balances and
distributions
How to verify, document, and record ABLE account
balances
How to verify, document, and record ABLE account
distributions
Handling and recording ABLE prepaid debit card
information
y
y
y
y
Our Futures, Our Wishes | 7978 | Our Futures, Our Wishes Our Futures, Our Wishes | 79
Additional Resources:
The Arc for people with intellectual and developmental
disabilities
The Arc is the largest national community-based organization advocating for
and serving people with intellectual and developmental disabilities and their
families. ARC encompass all ages and more than 100 different diagnoses
including autism, Down syndrome, Fragile X syndrome, and various other
developmental disabilities.
https://www.thearc.org/
The Arc Arizona Chapters
In Arizona, there are Arc chapters in Chandler/Gilbert (Chandler), Douglas
(Douglas), Gila County (Globe), Mohave County (Kingman), Northeastern
Pinal County (Kearny), Santa Cruz County (Nogales), Tempe, Tucson, YES
(Cottonwood), and Yuma County.
https://www.thearc.org/nd-a-chapter/arizona
ACL: Administration for Community Living
Protection & Advocacy Systems (P&As) work at the state level to protect
individuals with disabilities by empowering them and advocating on their
behalf. There are 57 P&As in the United States and its territories, and each is
independent of service-providing agencies in their states.
https://www.acl.gov/programs/aging-and-disability-networks/state-
protection-advocacy-systems
The Arizona Center for Disability Law
Protection & Advocacy System for Arizona
https://www.azdisabilitylaw.org/
Our Futures, Our Wishes | 79Our Futures, Our Wishes | 79
My ABLE Account Information
Name of Beneciary and Owner of ABLE Account:
_________________________________________________________________
Contributors to the ABLE account
Name, relationship to beneciary, and contact information
______________________________
_________________________
_________________________
______________________________
_________________________
_________________________
______________________________
_________________________
_________________________
Name
Relationship
Contact Info
Name ______________________________
Relationship _________________________
Contact Info _________________________
______________________________
_________________________
_________________________
______________________________
_________________________
_________________________
Name
Relationship
Contact Info
Name
Relationship
Contact Info
Name
Relationship
Contact Info
Name
Relationship
Contact Info
State where ABLE Account is located:
_________________________________________________________
Administrative body or person to contact about the ABLE Account:
_________________________________________________________
Person completing this page:
_________________________________________________________
Date ______________
Our Futures, Our Wishes | 8180 | Our Futures, Our Wishes Our Futures, Our Wishes | 81
Supported Decision Making
Supported decision making puts the person with the disability rst. He or she is the
most important person and is in charge of decisions being made. It involves the
belief that each person has a right to make decisions and to learn from them. That
person is at the center of the team. The individual with a disability decides who is
on the team with input from family and people who know and respect the person.
The team can include family, close friends, direct support professionals, personal
assistants, and health care professionals. In the medical eld you will hear about
the concept of shared decision making which is similar to supported decision
making. The emphasis is on health care decisions and end of life planning.
Supported decision making is also about close relationships and the belief that
each person has something valuable to give. Therefore, it is a partnership where
decisions are made together. It is about providing information and different
perspectives that can help the person with a disability make decisions that are
important to him or her.
Here are some ideas on how to facilitate and help with supported decision making:
Communicate clearly by doing the following:
y Pay close attention to the choice of words, gestures, behaviors, and other
forms of expression
y Be honest and give the facts – stay neutral as much as possible
y Allow the person with a disability to ask questions
y Allow others on the team to ask questions
y Understand and learn about appropriate technologies that are available to
assist with communication
y Provide information in multiple formats that use simple and clear language
Use scenarios or examples to understand options and choices
Write things down so you can see and follow a person’s thoughts and choices
y
y
Our Futures, Our Wishes | 81Our Futures, Our Wishes | 81
Identify and clarify the following:
y Person’s goals
Team’s goals
Facilitators and barriers to reach each
goal
Person’s concerns regarding a
decision
Pros and cons of each decision
Options and choices that are available
Costs of each decision and choice
y
y
y
y
y
y
As the person with a disability ages, there
are additional things to think about and
discuss.
Ask the person with a disability
and members on his or her team
the following questions:
y What additional supports are needed?
What becomes more important to him
or her over time?
What can inuence a person’s
decisions as he or she ages?
What may affect the person’s health
and well-being?
How does the person dene quality of
life at different life stages?
What additional resources are
available as one ages?
How do others know when the person
is providing “informed consent?”
y
y
y
y
y
y
y Will members on his or her team
recognize health and cognitive
changes?
How does the person with a disability
typically make important and tough
decisions?
What has worked well in the past?
What has not worked well in the past
and why?
y
y
y
On each person’s team, there may be one
or two individuals who play a key role in
ensuring that the person’s decisions are
communicated and implemented. This
takes time and a commitment from these
individuals. Their lives and circumstances
may also change over time.
Here are other considerations:
y Who will play key roles on the
individual’s team?
Who is available to help implement the
decisions?
How long will this person be available?
Who is available if the primary contact
person or persons cannot be reached?
y
y
y
During life’s many transitions,
circumstances and health conditions
will change and unexpected events can
occur. Shared decision making cannot
be implemented for every person with a
disability. It is just a part of a continuum
of decision making and ability to make
informed decisions.
Our Futures, Our Wishes | 8382 | Our Futures, Our Wishes Our Futures, Our Wishes | 83
The Continuum of Legal Options
This section is not designed to provide legal advice or recommendations. It is
about how to communicate needs and wishes when involved in a legal process.
When legal issues are unclear or you don’t know where to start or what to ask, it is
best to consult a lawyer with expertise in that area. There are also organizations in
your city and state that work closely on the behalf of persons with disabilities such
as Protection and Advocacy Systems, Planning Councils, and private nonprot
organizations. When reviewing printed or online materials, remember that federal
and state laws do change.
There are several legal options for individuals age 18 and older who need help
with decision making. The options are not covered here but a good resource is
the Legal Options Manual. This manual is regularly updated so make sure that
you have access to the most recent edition. You can nd it through the Arizona
Developmental Disabilities Planning Council or the Arizona Center for Disability
Law links below.
Arizona Center for Disability Law
https://www.azdisabilitylaw.org/
Arizona Developmental Disabilities Planning Council
https://addpc.az.gov/
Our partners include the Native American Disability Law Center in New
Mexico
https://www.nativedisabilitylaw.org/
Our Futures, Our Wishes | 83Our Futures, Our Wishes | 83
Guardianship
A Thoughtful Decision
Supported decision making and person-
centered planning are important
concepts and processes that protect a
person’s rights, self-determination, and
independence. Both concepts require
thoughtful and honest discussions about
what the person wants, his or her ability
to make informed decisions, and the
availability of natural supports like family
and close friends to be there when needed
and during a crisis.
Guardianships are complicated and
consulting a private attorney is helpful.
This option should be considered as the
last resort. For some individuals and
families it is an appropriate option. For
individuals and their families, this can be
a complicated and emotional process so it
is important to remember that caregivers/
family members also need support
and respect. Some families may seek
guardianship before the person’s 18th
birthday so there is a smooth transition
and some states allow this. Other families
may wait until there is an urgent need
or change. If guardianship is the best
option, individuals and families may want
to consider starting the process before a
crisis. You don’t want to place added stress
on the individual and family. Check with
your state laws about the ling process and
requirements.
Full legal guardians have total control
over decisions unless the court appoints
a limited guardian. A limited guardian has
decision making authority over specic
areas and the individual can keep some
of his or her decision making rights (for
example - right to vote and privilege to
drive).
The primary issue is whether the person
with a disability lacks “capacity.” In other
words, does the individual have the ability
to gather, use, and understand information
that will allow him or her to make informed
decisions. These areas include: health
care, housing and living arrangements,
friendships and intimate relationships,
budgets and nances, voting, driving,
entering into contracts, and other day-to-
day decisions we all make. It also involves
the ability to learn new skills that will assist
the individual to know when he or she may
be vulnerable and open to abuse (different
types), neglect, and exploitation.
84 | Our Futures, Our Wishes Our Futures, Our Wishes | 85
In Arizona, the probate judge makes the nal decision about guardianship with
input from a medical professional, court-appointed attorney for the individual,
petitioner or their attorney, and a court-appointed investigator. If the petitioner
is represented by his or her own attorney, that person also provides valuable
information. The investigator’s role is to serve as a neutral fact-nder who meets
with the individual and person or persons requesting guardianship. The investigator
may also speak with other people closely involved in the individual’s life. The
process can feel uncomfortable and intrusive.
The investigator’s assessment will address the following sets of
questions:
1. Is a full guardianship necessary?
a. What decisions can the individual make independently or with some
support?
b. To what degree can the person participate in decisions?
c. What kind of support does the individual need with his or her activities
of daily living?
2. Who is the appropriate person or persons to serve as guardian?
a. Are there other individuals who want to be the guardian?
b. Is there a desire or need to have co-guardians?
c. If co-guardians are being recommended, do they work well together?
d. If co-guardians want to share responsibility, do they both want the
authority to make decisions independent of one another?
The individual and family play an important teaching role in the guardianship
process. You can provide the attorneys and the investigator a more complete
picture of the life you share together.
Our Futures, Our Wishes | 85
Here are some things you can do:
y Provide a schedule or information about a typical day for the person with a
disability to show how everyone interacts with each other.
Explain how the individual participates in “activities of daily living” (bathing,
eating, toileting, grooming, etc.) to show one’s abilities.
Explain and give examples of how the person
communicates through words, sounds, gestures, and
behaviors to show the most comfortable and effective
ways to communicate.
Provide names and contact information of people
who play a close and important role in the life of
the individual with a disability. This provides the
opportunity to gather different perspectives.
y
y
y
Lastly, share your ideas for the future and how your
plan will ensure a good quality of life.
Our Futures, Our Wishes | 87
Our Futures, Our Wishes | 87
Chapter Four
Relationships and the
Human Connection
88 | Our Futures, Our Wishes Our Futures, Our Wishes | 89
Voices of Individuals and the Family Members
who Support Them
In this chapter, we hear the voices of individuals with a disability and from family
members who support them. Their messages teach us that friendships, close
relationships, and being loved are necessary to live a full and happy life. Nurturing
existing relationships, forming new connections, and spending time with each other
are what we all need in our daily lives.
Healthy Relationships
“Look at relationships and how to be in relationships in a healthy way. So you
know, how to be friends, and what does that look like? What is it like to have
a signicant other, are you interested in that? Loving your body, knowing your
body, you know accepting all those pieces and knowing how to navigate. And
also being in a safe relationship or safe relationship with anybody.”
Families Need Other Families
“Be involved with a couple other parents that are dealing with the same issues
because it’s nice to have that support to bounce things off of. Myself, I think
the biggest issue is the paperwork, all this—anything regarding paperwork—
living trusts, guardianship, burial plans, and all that stuff is—to me, I get
overwhelmed with that kind of thing where just discussing or trying to come up
with ideas—I don’t have a problem with that….I think, when you have a support
around you. For instance, I have a friend who told me, she’s got a daughter,
and she’s helped other people with the guardianship paperwork. She’s going
to help me through it. I think the support, like I said, is with other families that
have already dealt with certain things.”
Changing Roles
“We’re doing less and less for him. It’s been a slow process. He’s still doing—
not doing some things that a typical individual his age would, so in that sense,
that’s—that hasn’t really changed, but I think we have just probably fallen more
into the role of just supervising now, rather than doing things for him. That has
changed quite a bit.”
Our Futures, Our Wishes | 89
Culture, Tradition and Extended Family
“You have to also understand that as Hopi’s, we’re a communal-type people.
We don’t like to send our kids off just because there are resources available
to them, and they will be taken care of by somebody else. That’s not how we
think. Our responsibility is to our children, and we need to keep them here in
the community. We have extended families that help with that also…. He has
rst cousins. He’s got extended families. He’s got relatives and people that will
support him however they can when the time of need comes. That’s really what
we were—the whole village—I don’t know if you’ve heard that concept before,
but the village raises the child…. Some people call him even from New Mexico
to check on him to see how he’s doing. He’s got a lot of other people that know
him. I think it makes him feel good when people are really happy to see him,
too. The same way in the community he doesn’t isolate himself. He goes and
visits relatives and friends. He makes friends with an effort to do that. I think
he’s got a lot of social support.”
Reach Out to Me
“If there wasn’t so much crying or troubles in the world, and if I had more
money to do things, it would make things a lot easier, and if people weren’t
so afraid of helping people with disabilities or talking down on them, and
getting more of an opportunity for employment. I think that would make things
better…. They don’t want to start a friendship or a conversation, unless it’s for
a disability related event, people don’t usually want to start a friendship or a
conversation, because they’re not sure how that person with the disability is
going to react, especially when you can see the disability.”
Technology and the Social Connection
“Oh my gosh, everybody needs to have one of those - Alexa. He talks to it
constantly. I can hear him in the morning say - Good morning Alexa, how are
you? She will start to tell him what’s going on in the world, what the headlines
are, what the weather is like. At night, the same thing. He will ask, what’s going
on in Washington? What’s the weather going to be like tomorrow and she will
talk to him. It’s a wonderful way to gather information but also to interact. It
forces you to have speech with someone, it’s just a good tool.”
90 | Our Futures, Our Wishes Our Futures, Our Wishes | 91
Respite is For Everybody
“I’m a father and single parent for my son. For me, taking advantage of
respite was a learning curve…. Respite, it’s hard to get a family member to
take advantage of it.… It’s important for the other person to have a break from
you. My son needs a break from me to be around somebody else as well for
a weekend and overnight….One thing all of us know that when the rst time
you leave your child at daycare—whether they’re two or three or whatever,
if you have a child—it’s a heart-wrenching thing for you as a parent. The kid
starts crying, sure. But if you were to go back and look through—if you were
to somehow have a two-way glass, your child’s in there having fun. Then the
reunion at the end of the day, that’s an important part of everything….Respite
is a two-way street.”
Being Alone is Not Fun
“Living in an apartment was not making Tanya happy…. I could also tell she
was unhappy because she would spend no time at home. When I’d call her
in the evenings to check up on her, she wouldn’t be there. It was a problem
waiting to happen…. Her provider came up
with the Ranch setting which has just been
perfect…. My feeling was Tanya needed to
have other people in her home life, so she
felt like it was a home rather than just an
empty room to come home to at the end of
the day. That was probably the biggest, most
signicant change in her life that has led her––
what I think is really a good time in her life
where she really seems happy.”
Our Futures, Our Wishes | 91
Friends Looking Out for Each Other
“He works there twice a morning helping with the farming
duties. He takes care of animals, he has a roommate. For
the rst time ever, he has friends…. Not friends in the way that
we have friends, but friends in the way that his roommate—he knows
when his roommate isn’t there, and they tell me that he seems sad when his
roommate is not there. When his roommate comes back, he’s happy. His
roommate is non-verbal, but they have created a communication between the
two of them, where they wait for each other when it’s time to go to an activity.”
Sibling As Adult Peer
“It’s great. It’s not something to fear or dread as being too much of a burden
or too much work. It does require effort, but it’s not hard. In fact, it’s fun having
this kind of a relationship with her. As I said earlier, if I had to live with her, that
would not be fun, but being able to be an adult peer with her, and she came
over to our house for lunch for Easter Sunday and had a great time. When
she was ready to go home, she went home, and she’d had enough of us, and
we’d had enough of her, and it was great. I would be the rst to say that I don’t
think that our situation is what a lot of families are dealing with. I know a lot of
families are still back in that phase where they are all under one roof. They’re
all getting on each other’s nerves. I guess what I would say to those folks is
this too shall pass because we were there.”
Getting Reacquainted as Siblings
“Well, yeah, I’m learning a lot. I’m learning a lot from her. It’s mostly for the
good that’s she’s here, so we can work through these little hiccups or whatever
you want to call frustrations. I think we can have a good thing going here. We
absolutely love her. My daughter, my husband loves her. I think it’s going to
be a good, positive thing for us. It’s just going take some time, I think, for us
all to get to know each other really well. I’m ten years older than her, so when
she was born, I had more to do with her when she was younger in her toddler
times, and then as soon as I graduated high school, I was gone.”
92 | Our Futures, Our Wishes Our Futures, Our Wishes | 93
Impact of Professionals
“That they can make a difference. They really can and it must be very
challenging….. Because you really couldn’t see the effect you’re having,
but you are having an effect and it’s really important to know that…. I think
that’s important to know that your helping hands and it’s so hard to nd the
right one or to nd people, who are interested. I think these jobs are pretty
hard to do and maybe not always as rewarding. I would want them to know
that they really make such a huge difference. I remember the names of
practically every PT, OT, and speech therapist that we’ve had. They’ve made
such a huge difference and certainly every psychologist; they’ve made a
huge difference. We were just talking about some of them the other day. So
these are people, who we are not in touch with anymore, but they’ve made
our lives manageable and also they gave me hope…. Kyle was difcult, it’s
hard to see now, but he was really difcult. Especially, the teenager, he was
extremely challenging. He was really mad that he wasn’t like other kids so it
was a real challenging time.”
Love and the Human Connection
“I’ve gotten really sick of having to guess what people are thinking or feeling
or whether or not they mean what they say or not, or just trying to keep me
at arm’s length. If you spend ve minutes with me you will nd that I’m –
everything is functioning but my voice is just a little bit slower than you’re
normally used to hearing. I’m very bright, I’m very intellectual. And I mean
what I say.”
Hope For the Future
“I want to think about maybe getting married, but I’m not too sure
about that, and then I want to have children and eventually
be living out on my own or even with some friends that are
roommates of mine. I would like to nd something that I am
doing that would contribute money, but that’s really hard
because there’s not much employment for people out there with
physical disabilities.”
Our Futures, Our Wishes | 93
Partners in Life
“I would say sometimes I worry about it more than other people do. I’m
particularly anxious of my nding a partner to spend my life with…. And still to
this day I’m concerned about my job possibility, but I’m much more concerned
about nding a partner to spend my life with than I am about a job. But it is
very much real, because we’re not – we were not placed here to just work, pay
bills…. We are a social culture, we are a social species. Love is a birth right
from the creator. If we cannot have that we downward spiral easily.”
94 | Our Futures, Our Wishes Our Futures, Our Wishes | 95
Christopher and Cassandra
Proles of Individuals and Their Personal Journeys
Christopher is 29 years old and is the youngest
of three siblings. His sister Cassandra lives
in Tucson and the oldest sister recently
moved back to Southern California where
Christopher lives with his parents. Despite
living in another state, Cassandra and
Christopher talk frequently on the phone.
Christopher is on the autism spectrum
and has an intellectual disability.
From a very young age he could spell
everything he wanted to say and was
very good with numbers. He is a happy
person and handles things with grace
even when other people make assumptions
about him. He is a social person, very kind,
and doesn’t allow his disability to get in the
way of his happiness. Christopher has a passion
for helping others. He participates in a day program, takes classes, volunteers
at a senior home, and works at a thrift store where he
enjoys organizing things. Cassandra has witnessed
Christopher’s evolution as a man where “he is
always growing and always evolving, …he
teaches his own peers, has good intuition and
a good sense of what is right and wrong.”
Our Futures, Our Wishes | 95
Proles of Individuals and Their Personal Journeys
Future Planning
Cassandra and her sister have talked about sharing
responsibility but they are unsure what that
means or looks like for now, although they
know that Christopher wants to live with
family. The family started talking about future
plans when their grandfather died recently.
This triggered conversations about end of
life, nal arrangements, and what the future
may look like. Loss and grief are moments
that bring the family together and they
use these opportunities to have those
difcult conversations. Christopher
said after his grandfather’s
death, “grandpa died and I
feeling so sad but I don’t
cry at work because
it’s not appropriate.”
It is important to
the family to talk
openly, to share life’s
experiences, and
to look at planning
as something that
evolves. They are
exible yet they share
a commitment to talk
and plan together.
96 | Our Futures, Our Wishes Our Futures, Our Wishes | 97
Dirk and Tracy
Dirk loves to remind his sister Tracy that on
September 17, 2018 he will be 55 years
old. He gets more excited about planning
his birthday than any other holiday. He
wants burritos and pizza. Dirk also
made arrangements with the owner
of his Jazzercise site to dance on
stage next to the instructor for a few
songs. Dirk is a good dancer and the
instructor mirrors his movements – he
loves country western but enjoys music
from all genres. Dirk was looking for
an exercise option for health reasons
and started Jazzercise in 2008. When
Tracy comes home, he is always ready in his
exercise clothes so Tracy just can’t refuse.
Dirk is doing well but he has faced many transitions
in his life. He and his parents moved in 2004 to be closer to Tracy and her husband
Paul. They all lived in the same co-housing community.
Dirk’s mother died in 2010 and he became his father’s
caregiver until his death in 2016. He nds comfort
in talking to people who knew his dad and is very
much grieving like anybody would.
Dirk is currently living with Tracy, Paul, and
their 16-year old granddaughter Lucy who now
has her driving permit. She and Dirk often go
to get ice cream. In this family, Dirk plans the
social calendar for everyone.
Proles of Individuals and Their Personal Journeys
Our Futures, Our Wishes | 97
At the co-housing community, everybody knows Dirk. His job is recycling for the
community. This involves getting the garden cart and taking the paper mailings and
craft room scraps to the recycling area. He also loves working with the chickens
that live on the property. Everyone is very appreciative of Dirk’s efforts and the best
part is that Dirk has an opportunity to help other people.
Over the years, Tracy has noticed that Dirk’s short term memory has been
declining, but he can still do crossword puzzles. He does better with consistency
and order so the family has found creative solutions that help Dirk maintain his
independence. For example, Dirk can fold his laundry but has trouble organizing
his drawers of clothes. His family created a new clothing system by getting a metal
frame with shelves and bins. Dirk can now see the big picture and all his clothes. If
he wants his Jurassic Park t-shirt, he can nd it easily. The family also marked his
shampoo bottle as #1 and the conditioner as #2. This makes it easier to remember
which one to use rst.
Proles of Individuals and Their Personal Journeys
Future Planning
Dirk’s co-guardians were his father and Tracy. Now Paul is the
nancial representative and Tracy will be co-guardians
with her youngest daughter who lives nearby. If Tracy
and Paul are not available, Dirk will live with Tracy’s
youngest daughter because Dirk does not want to
be home alone.
Dirk’s future plans involved decisions
about where to live and with whom,
and who is available to provide
support with decision making
and problem solving. Tracy also
realized that social connections
are a very important part of Dirk’s
quality of life. Dirk was dealing
with the loss of his parents and
also a good friend named Roy.
98 | Our Futures, Our Wishes Our Futures, Our Wishes | 99
This friend was his support coordinator (SC) through
DDD. The SC would check in with Dirk and always
ask about the dances at Armory Park. They talked
about the woman that Dirk sees and dances
with. One day a different SC showed up and Dirk
found out that Roy moved on to another job. He
never received a letter or phone call from his
SC. Dirk decided that he doesn’t want
to go to the dances anymore. Tracy
realized the important role his
male SC played in Dirk’s life. He
was a friend and a condant.
Dirk did not have a chance to
say goodbye. Tracy is hoping
to nd someone else that
Dirk can talk to about his
female friend and dancing.
It is important to provide
information and closure in
all relationships because
attachments are formed like
everyone else.
Tracy feels blessed to live
with Dirk. She describes
him as “one of the
funniest people I know.
He is interesting
and because of co-
housing, he can have
a nice co-existence
with family, neighbors
and friends.”
Proles of Individuals and Their Personal Journeys
Our Futures, Our Wishes | 99
Katie
Katie has been involved with Ability 360 since
2006 and she now has a part-time position
teaching people with disabilities about self-
advocacy. She is passionate about her
work and states that, “I love to show
people how much they can do in the
world and how much they can speak
for themselves and do things. How
much they can overcome.” Her job
involves going to day programs to
teach people about how they should
be treated and want to be treated.
Katie has grown a lot in her
condence and skills. In her high
school special education classes,
she did not get a lot of support or
encouragement from her teachers because
of her physical and learning disabilities. She was
shy and later learned that she had to feel self-condent
and learn from other people. She told herself that “she had to get involved.”
Being involved with Ability 360 has provided opportunities for her to learn
from other people. Katie is now a role-model for others.
Ever since Katie was little, she wanted to be in a pageant and she always
watched them on TV. She was friends with the coordinator who started a
chapter for the Arizona Miss Wheelchair pageant. Katie won rst place!
As the 2016 winner, she traveled to Michigan to compete in the Miss
Wheelchair America contest. Katie said the highlight of the competition
was, “It wasn’t a beauty pageant, it was more like what people cared about
– things that meant something to them.” Katie’s message was promoting
leadership for youth and young adults. This experience gave Katie more
condence. She continues to be active in sports and community service.
Every month she tries to do a community service event and recently
Proles of Individuals and Their Personal Journeys
100 | Our Futures, Our Wishes Our Futures, Our Wishes | 101
participated in a fashion show for little kids with disabilities. In July, she got a medal
for the Desert Challenge National AZ Disabled Sports Program. She practiced with a
coach from January until June and competed against people from different countries
like Mexico.
Future Planning
Katie lives with her mother and younger brother. She states that, “When I think
about my future, sometimes it’s scary for me….I hope to be able to learn some
things – I need help with managing money and budgeting.” Her dreams include
marriage and having kids. She’s met a lot of people at her groups but has not met
that special person yet. Eventually, she hopes to live on her
own with some roommates. She would prefer to have
a roommate that is organized, who has a sense of
humor, is fun and likes to do things.
For now, Katie likes being with her mother and
is not ready to move out. She is 32 and her
younger brother is 24. She shares a close
relationship with her mother and
they talk about the future
often. Katie knows that
her mother is worried
and wonders if Katie
will be alright. Katie
feels it will be okay
and knows that
her brother will be
there to help her.
Katie continues
to do things
for herself and
others. She is an
inspiration.
Proles of Individuals and Their Personal Journeys
Our Futures, Our Wishes | 101
In Closing
Future planning is about possibilities, taking small risks, dreaming big, and creating
meaningful relationships. It is about communication that is honest, gentle, and
straightforward.
Here are some friendly reminders for your personal journey
y Be person-centered
y Start planning early
y Explore options
y Remain exible
y Include siblings and family
y Ask for help
y Remain on task
y Build networks
y Stay hopeful
y Work through emotions
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