Family Support At the St. Louis Arc, parents, siblings, significant others – all family members are welcome. We are committed to helping you connect to resources and become effective advocates for your loved ones. Whether you are looking to interact with people going through the same challenges, or in search of an activity for the entire family, the St. Louis Arc provides a lifetime of support. The St. Louis Arc Family Workshop Series provides in-depth information on supporting a family member with an intellectual or developmental disability. Most of our workshops are free, open to everyone, and take place at the St. Louis Arc Centene Family Center or Childgarden Early Childhood Center.

Charting the LifeCourse - Concepts and Tools to Achieve a Good Life Presented Wednesday, February 21 Wouldn’t it be great if we all started from a common understanding of how to best support people? What if we had simple tools to capture our creativity and ideas that would be recognized by individuals with disabilities, their families, and the professionals that provide support? For the past five years, the state of Missouri has led the movement to implement the Charting the LifeCourse model that does just that! Learn how to create your vision for a good life and develop meaningful steps to move in the right direction. This workshop is ideal for individuals with disabilities and their families. Presenter: Sharon Spurlock, Director of Family Support, St. Louis Arc

St. Louis Arc

1177 N. Warson Road, St. Louis, MO 63132

314-569-2211 ● www.slarc.org

Focusing on a “Good Life” for Persons with Disabilities

and Their Families

Getting to

Know You!

What is YOUR Vision for a Good LIFE?

Vision of What

I Want for a Quality of Life

Write down your responses on your worksheet & discuss

What You Don’t Want??

Vision of What

I Don’t Want

Write down your responses on your worksheet & discuss

Services and Supports are Evolving

What we know about current realities?

6

Expectations, Values, Culture

Evidence Based Practices

Policies and Budget

Demand for Services

Community

Family

Social and Medical Services

Person with Disability

The future is not something we enter. The future is something that we create. And creating that future requires us to

make choices and decisions that begin with a dream.

-Leonard L. Sweet

Vision for a Good Life

Trajectory towards Good Life

Friends, family,

self-determination,

community living,

social capital and

economic sufficiency

Vision of What I Don’t Want

Trajectory towards Good Life

Increasing independence

Work experience

Learning to cope with

failure/disappointment

Friendships

Isolation

Bullying

Dependence

Health Problems

Friends, family,

self-determination,

community living,

social capital and

economic sufficiency

Vision of What I Don’t Want

Focusing on Life Experiences

Birth-----Early Child----School----Transition---Adulthood-------Aging

“Anticipatory Guidance for Life Experiences”

“Chores and allowance”

“Birthday parties with friends” Learning to say “no”

“Playing sports or an instrument”

“Volunteering at church” “Making mistakes”

What was I doing when I was…

Michelle Reynolds, Ph.D. reynoldsmc@umkc.edu February 2014

TRAJECTORY WORKSHEET

VISION for the Life I WANT

Love and happiness

Friends

Having a purpose/feeling valued

Involvement in the community

Healthy-good health

Family

Success-successful relationships

Jobs

Hobbies

Stability

Safety (relationships)

To feel safe: safe environment, with people

Choice

Independence

Feeling valued

Financial security

Home

Access to needs

Transportation-for all

What I DON’T Want

Only one option

Boredom

Poor health

No control

Poverty

Loneliness

Crisis

Hopelessness

Abuse

Sadness

Lack of acceptance

Isolation

0-5 years Multiple Environments (family,daycare, church) Socialization Learning Early intervention Access to health care

6-12 years What do you want to do/be? Manners Social skills Electronics Learning responsibility Learning independence Exposed to world Expectations Communication

13-18 years Problem solving Mistakes/risks Consequences Value of choices Value of money Recognize Strengths/ Weaknesses Aware of others Self-awareness Learning to fill out applications Setting goals Having experiences Accepting limits

Daily Life & Employment

Facilitator: Mary Katherine Long Monitor: Carla McCarrell-Williams

What do I need to be doing to achieve my vision…

Integrated Supports For a good life

person or family

resources, abilities,

strengths, characteristics

family, friends,

neighbors, co-

workers,

community

members, church

members

school, businesses,

church/faith based,

public transportation,

parks and recreation

SHS services,

Special Ed,

Medicaid,

section 8,

Food Stamps,

Vocational Rehab

(VR)

i-pad/smart

phone

apps, remote

monitoring,

cognitive

accessibility,

adaptive

equipment Adapting,

Accommodating,

Integrating and

Accessing

Adapting, Accommodating and Integrating Supports:

Problem Solve Daily Routine

Morning Routine…………….Evening Routine

Sample Integrated Support

Star

TRANSPORTATION

Day-to-Day Integrated Supports

Thinking Across all Life Domains

Daily Life and Employment (education/employment, life skills)

Community Living (housing, transportation,

community access)

Social and Spirituality (friends, relationships and

leisure activities)

Healthy Living (medical, behavioral and

mental health, wellness,

nutrition)

Safety and Security (emergencies, legal, well-

being, guardianship and

alternatives

Citizenship and Advocacy (leadership, peer support,

making choices, setting goals)

Ben’s GOOD LIFE as Told by Mom

Tools Used for Planning and Day-to-Day Supports for DMH Division of DD (Ben’s One Page Profile)

WHAT PEOPLE

LIKE & ADMIRE

ABOUT ME

· I like to make other people feel good and be happy.

· I have a great smile and a contagious laugh. I frequently “get the giggles”!

· I’m fun, silly and friendly!

· I am a dedicated volunteer in my community

· I am an Eagle Scout and an adult leader in scouting - been involved in service through scouting since first grade.

· I am a man about town!

· My tattoo!!

· My great hugs!

· I am willing to try new things…

· I remember songs and who sings them

· I am not usually a complainer, even though sometimes I am in pain or uncomfortable

I PITY THE FOOL WHO DOESN’T LIKE

·

WHAT’S IMPORTANT TO ME · My family and friends

· Volunteering at the Fire Station, wearing my uniform and badge

· Going to the library

· Going to church

· My TV, DVR, and radio/CD player (I like to play them all at once sometimes)

· My iPad

· WWE wrestling – I love when my brother Matt takes me to live shows

· Nascar Racing(Jeff Gordon is my favorite driver)

· Going to country music concerts

· Feeling like I belong

· Being like everybody else, not being treated differently

· Getting a tattoo (already planning my next tattoo)

· Having control over my life as much as possible

· My Excelsior Springs Tigers – especially football

· Riding horses at NTRC

· Facebook friends

· Having an occasional beer with friends

· Having a purpose and being productive

BEN‘s ONE PAGE PROFILE!

HOW BEST TO SUPPORT ME

· I need help remembering things, like what I did or who I saw today.

· I get confused easily so I need help not getting lost or turned around when I am out and about.

· I know what times I am supposed to take my meds, but I need help getting them out and getting refills.

· I get anxious sometimes, need to be reassured that people I care about will be there for me.

· I don’t like to spend time alone, but I am working on it, help me not be so anxious when I am alone for short periods of time.

· I sometimes need someone to steady me if I get off balance.

· I need to rest or extra support if I have to do a lot of walking or standing. If I am shopping, it helps if I am the cart-pusher.

· I need support keeping in touch with friends and family and practicing having good conversations.

· I’m friendly even though I may not look you in the eye at first

Ben’s Life Trajectory

Ben’s

I-pad, apps,

Facebook,

Facetime,

Digital watch,

Vibrating

toothbrush,

Glasses

Omni bus, Walmart,

24 Hour Fitness,

library, Price Chopper, Dr. T.,

St. Ann’s church, ES Fire Dept,

joint bank account, direct

deposit, Power of attorney

Dad, Mom, Matt,

Zac, Ali, Chad,

Ericka, Sheli,

Firemen friends,

Ange, Pam, Wally,

Josh B., Matt S.,

Mike, Nick,

Scouting friends

PCA –DDD, self-

directed supports

Social Security,

Medicaid, Special

Needs Trust

Outgoing personality,

friendly, Eagle Scout,

can ride city bus

Ben’s

Integrated

Services

and

Supports

Star

Integrating Supports into Real Life

Life isn’t about how to survive the storm, but

how to dance in the rain.

-unknown

www.mofamilytofamily.org

Questions, Reflections and Discussion