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

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

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

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

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.

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?

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.

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.

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

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

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

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

The Original Tool

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

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

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

What are my supported decision making options?

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

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

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%

Decision Making Supports

Money Management Supports

Personal Safety Supports

Safety and Security: focus on Supported Decision Making

Ben’s Supported Decision Making Star

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

So….now what?

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!

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

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

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!

Questions?

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

Kansas Community of Practice for Supporting Families

Education and Empowerment Families: 2016 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

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

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

Education and Empowerment Families Together Person Centered Planning Training

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

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

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