Transitioning to Adulthood: It Takes a Network...opportunities for higher education, for a career, property ownership, and a family.” - Martinis, 2015 National Resource Center for

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

2

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

National Resource Center for Supported Decision-Making

EVERYONE has the Right to Make Choices 3

COME ON!

Why can't they be

like we were,

perfect in every way?

What's the matter with

kids today?-Bye Bye Birdie



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



IT AIN’T ALWAYS PRETTY

0at



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



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



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



http://www.dcf.state.fl.us/programs/indliving/docs/My Services Data Report Spring 2015 Final.pdf

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



http://www.dcf.state.fl.us/programs/indliving/docs/2015 Spring Florida NYTD.pdf

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



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)



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



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



http://www.dcf.state.fl.us/programs/indliving/docs/My Services Data Report Spring 2015 Final.pdf

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



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



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



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



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



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!



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



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).





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….

30

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)

31

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)

32

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)

33

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

34

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



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

36

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”

37

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

38

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

39

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



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.

http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Benefits/Early-and-Periodic-Screening-Diagnostic-and-Treatment.html

“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



https://www.medicaid.gov/Federal-Policy-Guidance/downloads/SMD052199.pdf

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)



THE ELEPHANT IN THE ROOM: SAFETY

NOTHING is 100% "Safe."

HOWEVER: Self-Determination is correlated with increased Safety

Khemka, Hickson, & Reynolds, 2005



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”



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



FOR THE CHILD…



…AND THE ADULT



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]



http://supporteddecisionmaking.org/

http://www.bbi.syr.edu/

mailto:[email protected]



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

Documents

Transitioning to Adulthood: It Takes a Network...opportunities for higher education, for a career, property ownership, and a family.” - Martinis, 2015 National Resource Center for