Transitioning Care:

Jacinda Sampson MD PhDAssociate Professor of Neurology

Neuromuscular and Neurogenetics

Many thanks to: Michileen Oberst, ALCSW

T H E S TA N F O R D C L I N I C S

N O V E M B E R 3 , 2 0 1 8

2

Transitioning your clinicLucile Packard Children’s HospitalMary L Johnson Specialty clinic 730 Welch Rd.

Stanford University Hospitals and clinicsStanford Neurosciences Health Center213 Quarry Rd.

3

Transitioning your team- old and new facesLPCH SNHC

John Day MD PhD John Day MD PhDCarolina Tesi-Rocha MD PhD Jacinda Sampson MD PhD

Jenna Klotz MD Jacinda Sampson MD PhD Yuen So MD Neelam Goyal MD

Connie Wolford NPKarolina Watson NP

Transitioning your multidisciplinary teamCardiology

Pulmonology

Beth Kaufman MD Matthew Wheeler MD Marco Perez MD David Liang MD

Michelle Cao MDMyMy Buu MD

Transitioning your therapists

Richard Gee PT Tina Duong PT Sally Dunaway-Young PT Chelsea MacPherson PT

PHYSICAL THERAPY

OCCUPATIONAL THERAPY

Janis Kitsua-Lowe PT Julie Muccini PT

More familiar faces

Michileen Oberst, Social Work

Carly Siskind, Licensed Genetic Counselor

Jennifer Fisher, Community Outreach Liaison

Transitioning to adult careWhen?

This may depend on your clinic, your individual doctors, and your insurance.

Why?Clinics, hospitals, emergency rooms may have maximum ages they will follow someone

Adult doctors for adult issues

How? Does not need to be all at once

Taking charge– your body, your healthYour diagnosis:

Do you have questions? Are there things your family and team assume you know, but you aren’t sure?

Your medications: Do you know your doses? Do you know what it is for? What side effects should you be aware of?

Your care team: What do each of them do, and how to contact them? How often should your appointments be?

Your input: Are you involved in discussing decisions about your medical care with your family?

Transitions- treating you as an adult• Adolescence and adulthood

• Autonomy and independence• Hormonal changes• Bone health• Dating and sex

10 PPMD website- transitions toolkit

Health Insurance – It’s complicated

Health Insurance planningTransitioning from Pediatrics to adult care

When and how to plan –1. Start to learn & gather facts around age 17 – there is a lot to consider

– everyone has to renew their health insurance annually and you need to know YOUR unique circumstances to make the BEST decision

2. Know your current benefits & their limitations – e.g. your parents can keep you on their policy ‘til age 26, but their employer can extend that if you have a qualifying disability. Talk to your HR (human resource) Department.

3. Changing from Pediatrics to Adult care means changing providers and it often means changing who accepts your insurance.

4. Be sure to know your Social Security Disability benefits and how they work with your health insurance. E.g. if you receive SSI then you have MediCal; if you start working and receive SSDI you may qualify for Medicare: https://www.ssa.gov/

Critical insurance questions to ask:

1. What doctors or hospitals have contracts with my insurance?

2. Will I need pre-authorizations for appointments or treatments?

3. Have I considered applying for straight MediCal versus a MediCal HMO?

4. Who can I talk with to further explore my health care options?

Resources:Hospital Financial Counselor & Social WorkerParents, families with similar circumstances (support groups)Insurance Web Sites: HICAP Healthcare Insurance Counseling Advocate Program

www.healthcareoptions.dhcs.ca.gov/https://www.nolo.com/about/about.html

California Children ServicesState funded & County managed

ELIGIBILITY:Age – Birth up to age 21Eligible Diagnosis (see State web

site)Income - = < $40,000 or out-of-

pocket exceed 20% of household income

Be resident of county in which application is made

Recertified annually

MTU – Medical Therapy UnitAge – ‘til age 21Eligible DiagnosisNo income eligibilityCounty ResidentPrescription for PT/OT

California Medi-cal

MEDICAL PLAN ENROLLMENT

(HMO)

Full Medi-Cal benefits assigned

to a county managed care

program

Patient needs a pre-authorization

to receive services from a

non-contracted provider – no

authorization needed for CCS

special care centers

STRAIGHT MEDICAL

EXEMPTION FROM PLAN

Full Medi-Cal benefits

Has no other health insurance

coverage

You have a complex medical

condition

No pre-authorization required

https://www.healthcareoptions.dhcs.ca.gov/

Education: What is Transition Planning?

Future planning for adolescent from school to:A) Post-secondary educationB) Vocational trainingC) Work/Supported EmploymentD) Independent Living

Individuals with Disabilities Education Act (IDEA)

Federal Law – 1975, 2004Formal process assess children with disabilitiesProvides specialized programs & servicesGuarantees free, appropriate education (FAPE)Least restrictive environment (LRE)13 eligibility categories – Other Health Impaired (OHI)

IDEA ‘04 defines Transition Services as . . .Coordinated set of activities with a result-oriented process focusing on

academics and functional achievement to facilitate movement from school to postsecondary education, vocational education, employment with consideration of the child’s needs, taking into consideration the child’s strengths, preferences and interests.

Education: Successful Transition Planning Basics

Support students throughout the process . . . Talk early and often!

Review IEP Transition process including legal mandates and best practicesCollege & Vocational Resources for Students with Disabilities

Three important resources:1. Secondary Transition Planning: The Basics2. Disability Benefits 101

&3. California State Vocational Rehabilitation

plus “Talent Knows No Limits”

IEP Mandates

COURSE OF STUDY & TRANSITION SERVICES:

Review Annually

Course work reflects secondary

goal

What will be worked on this year to achieve outcome

Measurable statement of

achievement leaving high school

1st IEP meeting by age 14

INVITE TO AGENCIES INVOLVED IN TRANSITION PLAN. WHY?

Lack of Adequate

Information

Lack of Coordination

Delays in Service

GOALS ARE BASED ON AGE APPROPRIATE ASSESSMENT:

9th & 10th grade receive career exploration assessment

11th & 12th grade receive vocational skills assessment

MEASURABLE POST-SECONDARY GOALS:

Enroll at a community college or university

Enroll in vocational trainingEnroll in adult education

WHAT SHOULD SCHOOL OFFER TO TRANSITION STUDENTS?

Certificate of completion or Diploma

Formal and informal assessments on post-secondary goals

Career educationJob instruction at schoolWork experience/related activities

TYPES OF ACTIVITIES TO SUPPORT POSTSECONDARY GOALS:

Explore careers that match interests/abilities

Career counselingWork experienceField trip to local collegesHelp in filling out college application

forms

Transition can mean . . .

1. Don’t automatically receive accommodations

2. Services governed by different federal laws & regulations

3. Students have to apply and request on own

4. High school documentation not sufficient sometimes, e.g. guidelines, dates

College/UniversityDisability Resource Centers (DRC)Rehabilitation Act of 1973 in Section 504

Counselor’s Role1. Provide accommodations &

assistance to students to achieve theirs educational goals

2. Provide equal access to all programs & services

3. Protect integrity of the college’s programs and services

Student’s Role1. Schedule appointment with DRC

counselor2. Bring documentation of your

disability and copy of high school IEP

3. Have request for accommodations arranged and documented

What is an Accommodation?

v Determined on an individual basis

v Supported by appropriate medical documentation

v Doesn’t compromise academic standards

Types of accommodations:1. Notetaking2. Audio Record Lectures3. Breaks in Class4. Furniture placement5. Testing Accommodations –

extra time

Student & Professor Communication

1. Student receives accommodation letter from Counselor at Disability Resource Center (DRC)

2. Student provides letter to each of their professors3. Professor only needs to know that student is registered at DRC and

what their accommodations are

Valuable Websites for Transition Planning

Transitions to College• What would you like to study?• Where would you like to attend? • Are you applying for scholarships? • What accommodations will you need?• Timeline and schedule? • Contact Office of Accessible Education, obtain an advisor

https://www.mda.org/young-adults/education

Transitions to Work• What would you like to do? • Resources: clinic social worker!• State department of vocational rehabilitation• Writing a curriculum vitae, practicing interview skills• Full time? Part time? • Transportation/commuting? • Stepping stones to employment

• Internships• Volunteering• Working from home, online employment

• Requesting accommodations• JAN (Job Accommodation network)• Americans with Disabilities Act

https://www.mda.org/young-adults/employment

Things Are About To Change

Personal Care AssistantsIn-Home Supportive Services Program (IHSS)• provides funding for a personal care assistant (PCA)• assistance in self- care (dressing, bathing bathroom)• assistance in travel• assistance at school or work

• this could be a family member, or hired outside the home• Interview candidates, make sure they understand what you need

• http://tknl.sdsu.edu/Toolkit/assistance.html

Planning your financial futureCalAbleAllows tax-free savings up to $15,000/hr without counting as income in

SSI eligabilitywww.treasurer.ca.gov/able

Financial Planning and Trusts

Stanford Comprehensive Neuromuscular Program

NeurologistsCharles ChoJohn DayLes DorfmanNeelam GoyalSafwan JaradehSrikanth MuppidiCarolina Tesi RochaSarada SakamuriJacinda SampsonYuen So

Neuromuscular PathologistsHannes VogelDon Born

Advanced Care ProvidersKarolina WatsonConnie WolfordGenetic CounselorCarly Siskind

Nurse CoordinatorsJessica GuzmanDeborah GilmanLiza Chong

Medical AssistantMediatrix Pia Vega

Physical TherapistsTina DuongRichard GeeChelsea MacPhersonSally Dunaway-Young

Occupational TherapistsJulie MucciniJanis Kitsuwa-Lowe

Speech TherapistSarah Stranberg

Respiratory TherapistsSusan Metcalfe

Social Worker**Michileen Oberst **

EMG TechniciansTim FasslerRika YamasakiEwa Fratczak

Clinical ResearchShirley PauloseLesly Welsh

Carolyn McLaughlinMonica Sangco

Laboratory ResearchKatharine HagermanSheela Crasta

AdministratorsGayla WengAngelica Martinez

Community LiaisonJennifer Fisher

IEP Mandates (continued)

COURSE OF STUDY & TRANSITION SERVICES

Reviewed AnnuallyCourse work must

reflect post secondary goal.

No later than age 16, but often sooner!

What will be worked on this year to

achieve outcome

Measurable statement of

achievement leaving High School

INVITE TO AGENCIES INVOLVED IN TRANSITION PLAN. WHY?

Lack of coordinatio

nDelays in

Service Lack of adequate

information

Things Are About To Change

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