1. May 17, 2017
Safety & Security: Supported Decision Making through Lens of LifeCourse

2. About Jane Mom of 3 sons, one with a developmental disability
Partners in Policymaking Graduate
Community Inclusion and Field Research Specialist
National Community of Practice on Supporting Families Staff
Missouri Family-to-Family HIC staff
Coordinator of activities focusing on supported decision making
Ben’s mom

3. Missouri: Took an Existing Curriculum and Products and “LifeCoursed It UP” Missouri Guardianship: Understanding Your Options and Alternatives Partnership between the UCEDD, Protection and Advocacy and the Developmental Disabilities Council

4. Mo Guardianship: Understanding Options and Alternatives
Developed and launched in 2009/2013
Workshops for families, self-advocates, and professionals
Promoted making informed decisions about guardianship with emphasis on supported decision making

5. First show the person,
Then show the family, `
then bring up the domains
And then the buckets
And then the outer layers
All these things work together to make a good life.

6. Every person can make choices and has a right to make decisions.
[Don Hoyle, The Arc of Michigan]
Do exercise on flip chart paper – what are the choices and decisions YOU make every day that you wouldn’t want anyone making FOR you?

7. It is important to remember that all adults are presumed competent to make choices about their lives. Sometimes, because of limited cognitive or communication skills, a person may need help making or expressing decisions.

8. What is guardianship? Missouri Revised Statutes
Chapter 475 Probate Code--Guardianship
(6) "Guardian", one appointed by a court to have the care and custody of the person of a minor or of an incapacitated person. A "limited guardian" is one whose duties or powers are limited.

9. Plenary or “Full” Guardianship
where to live
who provides personal care
who they live with
consent or object to medical care
who they associate with
where they may go in the community
enter into contracts (such as home ownership, marriage, rental agreements)
whether or not to marry
whether or not to work
obtain a driver’s license
how to spend money
right to vote

10. Where I work/what kind of job
How I spend $$ I earn
IF I work
Who I live with
Who I date/marry
Where I live
Faith life
Where I go
Who I associate with
What I eat/drink
Voting
Advocate for rights
Consent or object to Medical Care

11. Balancing GOOD LIFE VISION & What Person Does NOT Want with Support & Protection

12. Identifying areas of need for support and/or accommodation
Daily Life and Employment
Healthy Living
Social and Spirituality
Safety and Security
Community Living
Citizenship and Advocacy
Personal safety
Determining and Directing Supports
Money Management

13. The Original Tool

14. Stoplight Tool for Supported Decision Making
Filling Out “The Tool”
Stoplight Tool for Supported Decision Making

15. Filling Out “The Tool”
STEP 1
Answer
YES or NO
in the green column

16. Stoplight Tool for Supported Decision Making
Filling Out “The Tool”
Ben’s
Stoplight Tool for Supported Decision Making
YES NO NO NO NO
YES NO NO NO NO NO NO

17. What are my supported decision making options?

18. Filling Out “The Tool” STEP 2:
Is there an appropriate alternative for my specific need for support and/or protection?
YES NO NO NO NO
YES NO NO NO NO NO NO

19. Alternatives to Guardianship (Supported Decision Making)
Decision Making Supports
Money Management
Personal Safety

20. LifeCourse Integrated Supports STAR
resources, skills, abilities,
characteristics
i-pad/smart phone apps, remote monitoring, cognitive accessibility,
Adaptive
equipment
family, friends, neighbors, co-workers, church members, community members
Don’t put all your eggs in ONE basket
MAPPING
PROBLEM SOLVING
PLANNING LTSS
PLANNING ACTIVITIES
We ALL do this without even thinking about it
school, businesses, church faith based, parks & rec, public transportation
SHS services, Special Ed, Medicaid, Voc Rehab, Food Stamps, Section 8 R
100%

21. Decision Making Supports

22. Money Management Supports

23. Personal Safety Supports

24. Safety and Security: focus on Supported Decision Making

25. Ben’s Supported Decision Making Star

26. Supporting Ben’s Choices & Decisions
Ben’s Good Life
Supporting Ben’s Choices & Decisions

27. So….now what?

28. How do I make supported decision making happen?
LifeCourse/Person-centered decision making
You may need to seek appropriate legal counsel
It takes some work on your part!

29. Vision of What I Don’t Want
Trajectory towards Good Life
Friends, family,
enough money,
job I like, home, faith, vacations, health, choice, freedom
Trajectory towards Life Outcomes
What kinds of things did you say earlier for YOUR good life? PWD and families usually want those same types of things. Everybody “gets” what the good life is. We just don’t usually ask them! What kinds of things do you think PWD and families will say they DON’T want? Sometimes you need to start there – they may not know what they want (because they are thinking in disability world) but they almost always can tell you want they don’t. FAMILY should have a good life trajectory too.
TRAJECTORY is the path that will either lead you toward the good life or toward things you don’t want. Think about throwing a football – the path that the ball takes on it’s way to the receiver is the trajectory. If you shoot an arrow, or a nerf gun – the path that the arrow follows is the trajectory. CAN START at ANY AGE!!!!
Support coordinators, providers, DSP’s, VR counselors, teachers….. ALL have the power to impact someone’s trajectory, sometimes negatively, by their actions or words. We must be very careful and mindful of the impact we can have. Are we nudging person and family toward what they want or what they don’t want?? EACH interaction, think about which way it pointed their trajectory!
KINDERGARTEN story – segregated class and safer special bus
Trajectory isn’t always straight
Bumps in the road – you can get back on track
VISION and TRAJECTORY can be very broad or very specific and time limited. Might be what are we doing/what’s happening this wee
Vision of What I Don’t Want
Trajectory towards things unwanted

30. Don’t put all your eggs in ONE basket!!

31. Our online supported decision making resources
Check out the MO Guardianship Online Workbook  Flip the pages to watch videos, take quizzes, and learn about guardianship in Missouri!
Download the complete MO Guardianship Resource Guide
Download the MOF2F Information Packet about Guardianship
Go to moguardianship.org OR mofamilytofamily.org to dig deeper!

32. Questions?

33. Jane St John stjohnj@umkc.edu 800-444-0821
THANK YOU

34. Kansas Community of Practice for Supporting Families

35. Education and Empowerment
Families: Supported Decision Making Conference
Expected maybe 100 participants
Over 250 registered for event both in person and online
Introduce LifeCourse Framework
Jonathon Martinis, Sheli Reynolds keynote speakers

36. Education and Empowerment
Self Advocate Leadership Training
Partnership between, KCDD, Self Advocate Coalition of Kansas (SACK), and Kansas Leadership Center (KLC)
Integrated Leadership Training for Self Advocates
Self Advocates will train other self advocates in KLC leadership principles

37. Education and Empowerment
KU Med LEND program
Plans to use LifeCourse Framework to inform professionals

38. Education and Empowerment
Families Together Person Centered Planning Training

39. Education and Empowerment
Butler County Transition Council using LifeCourse Framework to help transition planning

40. Education and Empowerment
KCDD plans for biannual transition across the lifespan conference focusing on LifeCourse Framework
Plans for future Supported Decision Making conferences in different parts of the state
July 2017 Supported Decision Making within the context of the LifeCourse Framework will be presented at the Kansas Association of Community Action Programs (KACAP) Poverty Conference

41. Education and Empowerment
Families
Self Advocates
Educators
Professional
Grassroots activities to move the needle from Practice back to Intent on Supported Decision Making.