1. Supported Decision- Making: Creating a Culture of Coordinated Support

2. Never Forget: Rights=Choice=Self-Determination  Life control  People’s ability and opportunity to be “causal agents... actors in their lives instead of being acted upon” - Wehmeyer, Palmer, Agran, Mithaug, & Martin, 2000. 2

3. Never Forget: Benefits of Self- Determination People with greater self determination are:  Healthier  More independent  More well-adjusted  Better able to recognize and resist abuse - Khemka, Hickson, & Reynolds, 2005; O’Connor & Vallerand, 1994; Wehmeyer & Schwartz, 1998 3

4. Never Forget: Effects of Guardianship People with Intellectual and Developmental Disabilities who do NOT have a guardian are more likely to: Have a paid job Live independently Have friends other than staff or family Go on dates and socialize in the community Practice the Religion of their choice 2013-2014 National Core Indicators Study Right to Make Choices 4

5. So, Where DO We Go From Here? If :  We KNOW that some people need more support as they age or due to disability  We KNOW that guardianship can result in decreased quality of life and  We KNOW that increased self-determination leads to improved quality of life Then we need a means of INCREASING self- determination while STILL providing support 5

6. A Way Forward: Supported Decision-Making “ a recognized alternative to guardianship through which people with disabilities use friends, family members, and professionals to help them understand the situations and choices they face, so they may make their own decisions without the “need” for a guardian.” - Blanck & Martinis, 2015 6

7. Supported Decision-Making Can Help People  Understand information, issues, and choices;  Focus attention in decision-making;  Weigh options;  Ensure that decisions are based on their own preferences  Interpret and/or communicate decisions to other parties. - Salzman, 2011 7

8. Because of That Supported Decision-Making is MORE than JUST an alternative to guardianship.  It is a way to empower people to make their own decisions throughout their lives  It is a way to increase self-determination and improve life outcomes AND  It is a way to ensure that state and state agencies provide appropriate supports and services 8

9. Yet, Today “Too often, systems serving students with disabilities operate in “silos,” focused only on what they provide and unaware of what others do. Worse, some providers engage in territorial “battles” that duplicate or cancel out others’ efforts.” - Gustin & Martinis, 2016 (in press) 9

10. Case Example: Survey of 13-17 Year Olds in Florida Foster Care 75% DO NOT have an Education and Career Path Plan (Florida law requires career planning before exiting Middle School) 34% have an IEP, 34% don’t know if they have one 34% have “no one” who attends parent/teacher conferences with them, 36% have “no one” who helps them with school work @50% have NOT been told about educational waivers, scholarships and programs Only 9% are employed, 52% are NOT learning job skills, 61% say they need help/skills to find work but 62% have NOT been told about vocational programs 54% have NOT created a Independent Living Transition Plan (or don’t know if they did). Florida Dept of Child and Family Services, 2015, http://www.dcf.state.fl.us/programs/indliving/docs/My%20Services%20 Data%20Report%20Spring%202015%20Final.pdf http://www.dcf.state.fl.us/programs/indliving/docs/My%20Services%20 Data%20Report%20Spring%202015%20Final.pdf National Resource Center for Supported Decision-Making EVERYONE has the Right to Make Choices 10

11. Then What Happens? Survey of 18-22 Year Olds Aged out of Foster Care 7% employed full-time, 21% part time 19% received vocational training 53% did NOT lead their independent living plan 72% had been homeless 24% had “couch surfed” due to no place to live Florida Department of Children and Families, 2015: http://www.dcf.state.fl.us/programs/indliving/docs/2 015%20Spring%20Florida%20NYTD.pdf http://www.dcf.state.fl.us/programs/indliving/docs/2 015%20Spring%20Florida%20NYTD.pdf National Resource Center for Supported Decision-Making EVERYONE has the Right to Make Choices 11

12. The Problem: Lack of Coordination The “fragmented system of services within high schools and adult services... contributing to the failure... to prepare youths [with special needs] for the future.” Katsiyannis, deFur, & Conderman, 1998 12

13. Put Another Way Ask a person without disabilities: How Did YOU: Come up with short/long term goals Identify opportunities Develop skills Overcome challenges Advance in school, work, life 13

14. A Critical Difference TOO MANY people with disabilities: “become overwhelmed by the near-constant need to identify service providers, find funding streams, and set up supports. As a result, they can lose the opportunity to create and achieve vivid, constructive, and meaningful plans and dreams.” - Gustin & Martinis, 2016 (in press) 14

15. Example: Where is Support For Those Most At Risk? 75% DO NOT have an Education and Career Path Plan 65% do not have an IEP or don’t know 34% have “no one” who attends parent/teacher conferences with them, 36% have “no one” who helps them with school work @50% have NOT been told about educational waivers, scholarships and programs Only 9% are employed, 52% are NOT learning job skills, 61% say they need help/skills to find work but 62% have NOT been told about vocational programs 54% have NOT created a Independent Living Transition Plan (or don’t know if they did). Florida Dept of Child and Family Services, 2015, http://www.dcf.state.fl.us/programs/indliving/docs/My%20Services%20 Data%20Report%20Spring%202015%20Final.pdf http://www.dcf.state.fl.us/programs/indliving/docs/My%20Services%20 Data%20Report%20Spring%202015%20Final.pdf National Resource Center for Supported Decision-Making EVERYONE has the Right to Make Choices 15

16. Here It Is: Survey of 13-17 Year Olds In Foster Care 75% have an adult in their life they can go to for support 70% have reviewed career interests with an adult (21% with GAL) 95% have learned about interpersonal relationships 54% have learned about budgeting 66% have discussed medical care with an adult National Resource Center for Supported Decision-Making EVERYONE has the Right to Make Choices 16

17. Where do we go from HERE: A Culture of Coordinated Support “We must create cultural change by moving away from separation and silos. Instead, individuals, families, and providers must work together” to ensure that people with disabilities are empowered to:  Make their own decisions and direct their own lives, reducing the “need” for guardianship  Be at the center of their support plans, identifying their own goals and directing their own services with the assistance and coordination of the agencies that provide those services; 17

18. WHERE Do We Go From Here?  Be the primary “causal agents” of their support plans, more self-determined and able to access improved life outcomes;  Receive legally required supports and services in a coordinated, effective, and efficient manner. 18

19. In a Culture of Coordinated Support People and Agencies:  Plan and coordinate their work “so that each knows what the others are doing and will do”  Ensure that the person’s various support plans support plans describe how “each agency and provider will work with the others to help the person achieve his or her goals.” Gustin & Martinis 2016 (in press) 19

20. Action Steps to Coordinated Support Think, Listen, and Listen Again – WHAT does the person want? Recognize Opportunities and Challenges: WHAT does the person need? Identify Allies: WHO can provide it? Empower and Implement Support: WHO WILL provide it? HOW and WHEN? Coordinate Efforts: HOW and WHEN will the people and providers work together? Write and Attach Create a written plan as part of the IEP, ISP, IPE, and other plans 20

21. How? Supported Decision-Making State-wide, cross-program use of Supported Decision-Making is the key to creating a Culture of Coordinated Support.  Creates a “common tongue” for working with the person and coordinating plans and efforts  Ensures the person is at the center of the plans  Ensures that the agencies meet their obligations 21

22.  Education: “Student Led” IEPs/ Education and Career Path Plan/Transition Plan  Employment: “Informed Choice” in Vocational Rehabilitation  Medical Care: Person Centered Planning for Medicaid and Waivers Opportunities For Coordinated Support Are All Around Us

23. Coordinated Support Opportunity: Special Education The Purpose of Special Education “to ensure that all children with disabilities have available to them a free appropriate public education... and prepare them for further education, employment, and independent living.” 20 U.S.C. § 1400(d)(1)(A) (emphasis added). National Resource Center for Supported Decision-Making EVERYONE has the Right to Make Choices 23

24. 24 Coordination Opportunity: Transition Services Transition Services are a “coordinated set of activities” including: “instruction, related services, community experiences, [and] the development of... post-school adult living objectives, and, when appropriate, acquisition of daily living skills” 20 USC 1401(34)

25. 25 Transition Services Start: “Beginning not later” than the year the student turns 16 (20 U.S.C. § 1414(d) Continue: At least until student is 21 (34 CFR §300.101)

26. 26 YOU HAVE FIVE YEARS To “coordinate services” To “coordinate community experiences” To “coordinate the development of post-school adult living objectives” To “coordinate... the acquisition of daily living skills” To “prepare for further employment, education, and independent living”

27. Coordinated Support Opportunity: Vocational Rehabilitation VR program provides services and supports to help people with disabilities: “prepare for, secure, retain, advance in, or regain employment” Rehabilitation Act, 2006, § 722 (a)(1) 27

28. Ask Yourself What are the things that keep people with disabilities from working? If you need something/ANYTHING to prepare for work, get a job, or keep a job, you can get it through the VR program 28

29. Barriers to Employment: Survey of 13-17 Year Olds in Florida Foster Care Reading and/or math skills: 16% Job Coaching: 18% Proper Clothing: 15% Learning how to complete a resume: 24% Interviewing skills: 24% Learning how to work out problems with coworkers and bosses: 13% Learning how to complete a job application: 18% Finding companies that are hiring: 32% Florida Dept of Child and Family Services, 2015 National Resource Center for Supported Decision-Making EVERYONE has the Right to Make Choices 29

30. VR CAN ADDRESS ALL OF IT Some services that are available:  Assessments  Counseling  Job search and retention services  Education  Assistive technology  Medical and mental health careOn the job training  Job coaches  Transportation  Services to family members (like Day Care!) - 34 CFR 361.48 30

31. Support is Built In! VR Agencies must ensure that the person can exercise “informed choice” “Informing each applicant and eligible individual... through appropriate modes of communication, about the availability of and opportunities to exercise informed choice, including the availability of support services for individuals with cognitive or other disabilities who require assistance in exercising informed choice throughout the vocational rehabilitation process” 31

32. Coordination Is Built-In! The Workforce Innovation and Opportunity Act requires VR to “significant emphasis on the provision of services to youth with disabilities” - U.S. Department of Education, 2014 Federal law requires VR to become involved in Special Education services “as early as possible” - 34 C.F.R. § 361.22 32

33. COORDINATED: Special Education and VR Can  Help Students identify work/life goals  Link Students to services  Give Students work and community living experiences  Identify, provide, and fund needed services and supports  Build Self-Determination skills 33

34. The Situation Out There:  In DC….  70% of people served by Department on Disability Services have a guardian or substitute decision-maker.  Nationally….  According to the CQL database, only one-half or fewer of the over 8,100 people reviewed were exercising choices about home, work, goals or services in a way that was meaningful to them. Coordinated Support Opportunity: Medical Care And Planning

35.  Assistance can be provided to help individual make medical decisions: “Explain that to me in English”  Ability to make decisions is a continuum. A person may be able to make some but not others You Can Consent to Surgery Without Being Able to Perform It! Support Opportunity: Informed Consent

36. Power of Attorney giving agent decision-making authority: “It is my and my agent’s intent that we will work together to implement this Power of Attorney. That means that I should retain as much control over my life and make my own decisions, with my agents support, to the maximum of my abilities. I am giving my agent the power to make certain decisions on my behalf, but my agent agrees to give primary consideration to my express wishes in the way she makes those decisions.” Coordinated Support Opportunity: Power of Attorney with Supported Decision-Making

37. “My agent will work with me to make decisions and give me the support I need and want to make my own health care decisions. This means my agent will help me understand the situations I face and the decisions I have to make. Therefore, at times when my agent does not have full power to make health care decisions for me, my agent will provide support to make sure I am able to make health care decisions to the maximum of my ability, with me being the final decision maker.” Coordinated Support Opportunity: Advanced Directive with Supported Decision- Making

38. Coordinated Support Opportunity: Person Centered Planning Person Centered Plan MUST:  Address “health and long-term services and support needs in a manner that reflects individual preferences and goals.”  Result “in a person-centered plan with individually identified goals and preferences, including those related community participation, employment, income and savings, health care and wellness, education and others.” ww.medicaid.gov/medicaid-chip-program- information/by-topics/long-term-services-and- supports/home-and-community-based- services/downloads/1915c-fact-sheet.pdf 38

39. The Problem with Person Centered Planning Plans must provide and document supports giving people the opportunity to choose:  Daily activities; physical environment options; the people they interact with; services and opportunities to “exercise initiative, autonomy and independence”; set their own schedule, etc HOW CAN ONE AGENCY DOCUMENT ALL THAT, LET ALONE DO IT?! 39

40. The Unintended Consequence  Planning sessions become exercises in “box checking”  Instead of working with the person to set up plans, case managers have to make sure they meet ALL the settings rule requirements  Leads to meetings with questions like “Are you given choice in who you interact with?” 40

41. The Solution: Coordinate Support A Culture of Coordinated Support can meet the requirements of the Rule and, more importantly, provide real, effective supports that empower the person to be more independent.  Coordinated Support Plans “check the boxes”  The person and providers will have already discussed and identified the person’s community living goals, the supports the person needs to achieve them, and who will provide them. 41

42. The Solution: Coordinate Support In a Culture of Coordinated Support, the Person and Providers will have already:  Discussed, made plans, and coordinated supports based on the person’s education, employment, and financial goals.  Coordinated Support Plans provide documentation of the planning process and the SDM methods the person used to exercise choice and independence. 42

43. The Solution: Coordinate Support Because the “boxes have been checked”  Case managers can concentrate on working with the person to his or her existing supports and  Determine whether the person has other goals or other supports that could be met through the Waiver. A Culture of Coordinated Support makes Person Centered Planning truly “person centered” 43

44. Coordinated Support can work in a number of contexts – if it requires a decisions, Supported Decision-Making can help the person exercise the Right to Make Choices Coordinating Support Throughout The Life Course

45. I will not buy, sell, manage, or otherwise take or exercise any interest in any tangible property or item costing or worth more than $X without my agent’s agreement. For example, if I want to buy or sell a car for $20,000, I would need my agent to agree or the sale could not go through. In making decisions whether or not to buy, sell, manage, or otherwise take or exercise any interest in any tangible property or item costing or worth more than X, my agent and I will discuss the situation and give consideration to my express wishes before my agent decides whether or not to agree. Example: Financial Authority

46. “My agent and I will review this [Power of Attorney/Advanced Directive/Plan] to see if it should be changed or cancelled at least every ______. However, unless my agent and I change the power of attorney, I cancel it, my agent resigns, or either I or my agent dies, the [ ] will continue.” “Growth Clause”

47. Coordinated Support in Action: Project RENEW Provided young adults with coordinated services including employment planning and training as well as education in independent living skills and social skills (Malloy, 2013). First year of program –93% of participants found employment –69% maintained employment for more than 6 months 2 years after program –94% either completed high school or were involved in a high school program –75% were enrolled in post-secondary education –83% found employment (Hagner, Cheney, & Malloy, 1998) National Resource Center for Supported Decision-Making EVERYONE has the Right to Make Choices 47

48. Remember The Challenge EVERY great advance fundamentally changed the way “things have always been” 48

49. Change is HARD “We were not promised ease. The purpose of life... is not ease. It is to choose, and to act upon the choice. In that task, we are not measured by outcomes. We are measured only by daring and effort and resolve.” - Stephen R. Donaldson Remember The Obstacles

50. Independence and Self Determination “If we create a Culture of Coordinated Support... service providers will meet their obligation to help people with disabilities dream and lead lives of independence and meaning. If we create a Culture of Coordinated Support, people with disabilities will have the same opportunities for success and security as their nondisabled peers. If we change the culture, we will change the world!” Gustin & Martinis, 2016 (in press) Remember The Goal

51. Join the Conversation The Burton Blatt Institute at Syracuse University: BBI.Syr.EduBBI.Syr.Edu Jonathan Martinis, Senior Director for Law and Policy: JGMartin@Law.Syr.EduJGMartin@Law.Syr.Edu Other Resources Available At: National Resource Center for Supported Decision-Making: SupportedDecisionMaking.Org SupportedDecisionMaking.Org 51