Jonathan Martinis
S en ior D i rector for Law and Po l i cy
T h e Bu rton B la tt In st i tu te a t Syra cu se
Un ive rs i t yPro ject D i rector,
Na t ion a l Re sou rce Ce nte r for Su p p orte d
De c i s ion - Ma kin g
Transitioning to
Adulthood:
It Takes a Network
THE MORE THINGS CHANGE…
“The children now loveluxury. They have bad manners, contempt for authority; they show disrespect for elders and love chatter in place of exercise.”- Socrates
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THE MORE THEY STAY THE SAME
”I would there were no agebetween ten and three-and-twenty, or that youth would sleep out the rest; for there is nothing inthe between but getting wenches with child, wronging the ancientry, stealing, fighting.”- William Shakespeare
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COME ON!
Why can't they be
like we were,
perfect in every way?
What's the matter with
kids today?-Bye Bye Birdie
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CH-CH-CH-CHANGES
“The toddler must say no in order to find out who she is. The adolescent says no to assert who she is not.”- Louise J. Kaplan
“[G]rumble by eye roll, snide comment by questionable fashion choice, our adolescent is learning to be independent.”- Martinis, 2015
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IT AIN’T ALWAYS PRETTY
0at
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BUT IT WORKS
“As she grows and matures, society will reward her with increased privileges and responsibilities: driving, voting, opportunities for higher education, for a career, property ownership, and a family.”
- Martinis, 2015
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A CRITICAL DIFFERENCE
Students without disabilities: “students . . . and families typically navigate with the assistance of a guidance department and the parent’s personal experience”
Students with disabilities: “Figuring out who the different service provider representatives are and what their roles are can take on a life of its own that often overwhelms families, mostly because the different service systems are not always clear on what their roles are or get into territorial role definitions that impact forward progress and planning.”
- Gustin, 2015
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AND THOSE MOST AT RISK?SURVEY OF 13-17 YEAR OLDS IN 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%20Data%20Report%20Spring%202015%20Final.pdf
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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/2015%20Spring%20Florida%20NYTD.pdf
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NO MATTER WHO YOU ARE: ONE GOAL
“The steps out of school should allow for a foundation that will foster a lifetime of opportunity and happiness. Many of the means to achieving those outcomes are the same: enrollment in post-secondary education, vocational training programs, experiencing work, and developing social networks that foster long-term meaningful relationships and opportunity for continued growth.”
Gustin, 2015
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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
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THE SOLUTION:A CULTURE OF COORDINATED SUPPORT
State and System-Wide agencies and organizations providing appropriate supports and services AND collaborating with others to coordinate, complement, and supplement those services and supports.
Gustin, Martinis, & Blanck (in press)
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PUT ANOTHER WAY
How Did YOU transition?Develop short/long term goalsIdentify opportunitiesComplete college applicationsWrite a resumeGet a job“Most likely all of these experiences happened with support, either from your family or mentors.”Gustin, 2015
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WHERE IS THE 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%20Data%20Report%20Spring%202015%20Final.pdf
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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
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COORDINATED SUPPORT GOAL:EMPOWERING 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
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BENEFITS OF SELF-DETERMINATION
People with greater self determination are more likely to be:
Employed and earn more
Independent
Healthier
Better able to recognize and resist abuse
Khemka, Hickson, & Reynolds, 2005; O’Connor & Vallerand, 1994; Wehmeyer & Schwartz, 1998
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Working with “[F]riends, family members, and professionals to help them understand the situations and choices they face, so they may make their own decisions and direct their own lives”
Blanck & Martinis, 2015
PROVIDING SUPPORT: SUPPORTED DECISION-MAKING
How do you make decisions?
What do you do if you’re not familiar with the issue?
Taxes?
Medical Care?
Auto Repairs?
What Do You Do?
THINK ABOUT IT
SUPPORTED DECISION-MAKING AND
SELF-DETERMINATION
“Supported Decision-Making has the potential to increase self-determination of people with disabilities, encouraging and empowering them to reap the benefits from increased life control, independence, employment, and community integration”
Blanck & Martinis, 2015
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There is no “one size fits all” method of Supported Decision-Making.
Can include, as appropriate
Informal support
Written agreements, like Powers of Attorney, identifying the support needed and who will give it
Formal Micro-Boards and Circles of Support
Martinis, Blanck, and Gonzalez, 2015
ITS A PARADIGM, NOT A PROCESS
IN COMMON
ALL Forms of Supported Decision-Making recognize:That EVERYONE has the Right to Make
Choices to and direct their own lives to the MAXIMUM of his or her ability
That people can get help exercising their rights
That there are AS MANY WAYS AND PLACESto get help as there are people
Dinerstein, 2012
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BUILDING A COORDINATED SUPPORT
TEAM
A Coordinated Support Team can include: The Person The Person's chosen Friends, Family, Professionals Educators Counselors Service Coordinators Providers Advocates Anyone Else who Can Contribute!
THINK BROADLY!
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CREATING A COORDINATED SUPPORT
PLAN
Review! Go through each area of the individual's life.Example: Financial, Medical, Social, Employment
Brainstorm! Does the person need support in these areas? If so, talk about what support could help, who could
provide it, and how
Write! As you develop support solutions, create a written plan for the person and team to use
Attach! Include it as part of the person’s IEP, ISP, IPE, and other plans
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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
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).
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Therefore
Self determination is the ultimate goal of education(Halloran, 1993)
Promoting self-determination is a special educational “best practice” (Wehmeyer & Hughes, 1998).
Schools should focus on improving students’ ability to set goals, solve problems, make decisions and advocate for themselves and, just as importantly, to give students the opportunity to exercise these skills.(Wehmeyer & Gragoudas, 2004).
Guardianship is the default option for students with intellectual disabilities
(Payne-Christiansen & Sitlington, 2008).
School personnel are the most frequent source of recommendations that parents seek guardianship
(Jameson, et al, 2015)
AND YET….
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Coordination Opportunity: SpEd 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)
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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)
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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”
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)
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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
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BARRIERS TO EMPLOYMENT:SURVEY OF 13-17 YEAR OLDS IN 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
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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
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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”
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OPPORTUNITIES FOR COORDINATION ARE
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
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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
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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
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
Think about a HIPAA release
What does it do?
HOW?
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 PLAN OPPORTUNITY:POWER OF ATTORNEY WITH SUPPORTED DECISION-
MAKING
“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 PLAN OPPORTUNITY:ADVANCED DIRECTIVE
WITH SUPPORTED DECISION-MAKING
COORDINATION 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
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Early and
Periodic
Screening
Diagnosis
Treatment
COORDINATION OPPORTUNITY:EPSDT
EPSDT is designed to identify and treat problems EARLY before they worsen.
Available to ANYONE receiving Medicaid (through “State Plan Option,” HMO, or Waiver) who is under 21
You do not have to enroll - it is NOT a separate Medicaid program
http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Benefits/Early-and-Periodic-Screening-Diagnostic-and-Treatment.html
WHAT IT IS.
“necessary health care, diagnostic services, treatment, and other measures . . . to correct or ameliorate defects and physical and mental illnesses and conditions discovered by the screening services, whether or not such services are covered under the State plan.”
42 U.S.C. § 1396d (r) (5)
WHAT IT COVERS
ANYTHING that can conceivably be covered by Medicaid, whether or not Florida covers it for adults.
“[N]o Medicaid-eligible child in this country, whatever his or her economic circumstances, will go without treatment deemed medically necessary by his or her clinician.” Rosie D. v. Romney, 410 F.Supp.2d 18, 22 (D. Mass. 2006).
IN PRACTICE: WHAT IT COVERS
So, if child’s condition causes him or her to have difficulty exercising self-determination, EPSDT must cover supports and services to help the child overcome this.
THINK BROADLY
SELF-DETERMINATION
OPPORTUNITIES FOR COORDINATION ARE
BUILT-IN!
When a school is a Medicaid provider, medically necessary services in an IEP are covered by EPSDT instead of from school funds.
https://www.medicaid.gov/Federal-Policy-Guidance/downloads/SMD052199.pdf
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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
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
“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”
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)
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THE ELEPHANT IN THE ROOM: SAFETY
NOTHING is 100% "Safe."
HOWEVER: Self-Determination is correlated with increased Safety
Khemka, Hickson, & Reynolds, 2005
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SIGNS AND SIGNALS –ABUSE AND
EXPLOITATION
Injuries
Unusual bruising or abrasions
Fear or nervousness
Withdrawal
Changes in hygiene, living standards
Things are missing
Unexplained ATM or Credit Card
BUT REMEMBER: PEOPLE CAN MAKE BAD
DECISIONS
Health
Money
Love
Living Conditions
REMEMBER THE CHALLENGE
EVERY great advance fundamentally changed the
way “things have always been”
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REMEMBER THE GOAL
“Long after the schools, Vocational Rehabilitation, early interventionist, behavioral consultants, and para-educators have gone. the students will be adults. . . We [are] ethically, morally, and fiscally responsible for supporting their lives of success and meaning. . . . We have the tools, we have the means, and with the students. . . we have the vision.”
Gustin, 2015
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FOR THE CHILD…
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…AND THE ADULT
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JOIN THE CONVERSATION
The National Resource Center for Supported Decision-Making: SupportedDecisionMaking.Org
The Burton Blatt Institute at Syracuse University: BBI.Syr.Edu
Jonathan Martinis, Senior Director for Law and Policy: [email protected]
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This project was supported, in part by grant number HHS-2014-ACL-AIDD-DM-0084, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.
About this Project