TRANSITION Journey of the chronically - PowerPoint Presentation

Slide1

TRANSITION

Journey of the chronically ill into adulthood

Engaging the whole person.

Baylor College of Medicine Transition Medicine Clinic

Dr. Cynthia Peacock, MD

Medical Director

713-798-0216

Slide2

Our team

Dr. Cynthia Peacock, MD Medical DirectorDr. Tamiko Kido, MD Lisa Osten, LCSW Program Director

Angela Caughlin, LCSWLeanna Byrd, RN

Allison

Carter, CMA

Slide3

What is healthcare transition?

The purposeful, planned movement of adolescents from pediatric to adult healthcare. Especially challenging for those with special needs.

Slide4

Why do we need

a transition clinic“

We used to take turns having John give us rides in his wheel barrel and if we wanted to ride our bikes down to the corner store, the parents in the neighborhood would only allow this if John rode with us. I guess the parents thought having an adult figure with us would protect us. Thinking back on it, I think we were John’s protector. We never allowed anyone to tease him or call him names. Of course as a kid you would always protect your friend, and he was our friend.”

“

S

he reminded me of a promise that I made to her as a child. The promise was that I would grow up and get a job taking care of people like Johnny and John. She asked me if I would be able to keep that promise

.”

~ Cynthia Peacock, M.D.

Slide5

Transition is a process,

not an event500,000 U.S. children with special health care needs turn 18 every year12 million U.S. children and youth have significant chronic health care issuesMost children with chronic disease or disability now survive into adulthoodHealth care transition is:

Purposeful, planned movement of adolescents from pediatric to adult health careEspecially challenging for those with special health care needs

Slide6

What is the goal of the Transition Medicine Clinic?

Connect to adult services, no interruption of care

Identify changes in services at 18 and 21

Provide a medical home

Case management & care coordination

Medical and Social Work services

Teach health care providers

Slide7

Barriers to transition

Insurance: p

ediatric traditional Medicaid to adult HMO Medicaid

Adult Medicaid

limits

on what is covered/quantity/in network & cap

Accessibility

to waiver programs

Financial disincentives

to care for population

Deficits

in education/experience for adult healthcare providers

Limited

outcome literature on transition health care/no information on best practices

Workforce

shortage

Slide8

Getting ready for transition?

Medicare/Medicaid differences Social Security disability determinations Child Medicaid to adult Medicaid changes

Private insurance coverage Case management use

Medicaid waivers, waiting lists and benefits

Nursing hour

benefit changes

DARS programs

Access

to adult dental care

Mental health benefits/Medicaid free sessions

Medical assistance

only

Important things to know

Slide9

Applying for Social Security disability at 18?

Disability determination criteria changes at 18Parent income excluded at age 18Work ability at 18?Development under 18?SSA.gov Blue Book provides criteriaPASS program @ DARS/some income disregarded

SSA 1-800-772-1213

Slide10

Private insurance

Contact human resourcesComplete a Disabled Dependent form for an adult childBefore age 26Not portableOther insurance options at www.healthcare.gov

Keeping it past the normal aging out point?

Slide11

Case manager helping to access services?

Finding an in-network PCPMedication assistanceOut of network authorizationsMedical equipment approvalsAttendant and nursing care

Slide12

Medicaid Waiver Programs

Waivers: HCSCall local MHMRACLASSMDCPCBACall 1.877.438.5658 DADS

CBA Star Plus Waiver Call Medicaid HMOCall waiver list every 6 months

Benefit

: more dollars for services not covered by Medicaid after 21 years of age

Get on the waiting list – it’s never too early!

Slide13

What about patients with nursing care?

Contact Advocacy, Inc. by age 20 to maximize adult nursing hour benefit 512.454.4816Waiver programs or Enroll in an HMO Medicaid program to access adult nursing hours through CBA Star Plus waiver

Slide14

DARS – what do they offer?

Vocational rehabComprehensive rehab (spinal cord & brain injuries)Independent living services and centersDARS 1.800.628.5115

Slide15

Guardianship information

Brazos Bend Guardianship Services281.207.2320Guardianship packets through ARC of TexasHarris County guardianship program713.363.2300Ask about guardianship limitations with treatment options

Slide16

Dental coverage

Medicaid dental coverage reduced at age 21OptionsUT Dental Clinic for medically complex patients713.500.4296Houston Children’s Dental Center - special needs, all ages 713.481.9500County System, FQHC’s and charity clinics

For medically complex over age 21

Slide17

Mental health benefits

Free counseling sessions through Medicaid

Contact

any mental health provider who takes Medicaid for payment

Slide18

Insurance coverage

Medicaid and supplemental Security income is lost when

Income is increased by retirement, survivor or disability benefits

No Medicare for 2 years leaves coverage gap

Options

Disabled Adult

C

hild

Disregard

Pickle Disregard

Plan to Achieve Self-Support (PASS)

PICP: Pre-Existing Condition Insurance Plan

1.800.220.7898

Slide19

Who do we see at the Transition medicine Clinic?

Slide20

Our patients

326 current, active patientsEthnicity

Caucasian, Black, Hispanic, Asian

Ages

17 – 58

Most referrals are ages 17-27

Diagnosis

IDCP, Down Syndrome,

Spina

Bifida, Autism,

n

euromuscular disorders,

g

enetic disorders

Slide21

What we have learned

Transition is a process, not an eventLack of community healthcare providers who will accept this group of patientsBig gaps in school transition curriculums

Most patients have not participated in a transition curriculumLimited opportunities for employment, supportive employment adult day programs

Slide22

And most important

Slide23

Our patients have

AMAZING stories“The word “inspire” when dissected to its Latin root, means “to breathe life into or upon.” As my younger brother Benjamin struggles for every breath of his life, he miraculously produces a heartening influence on every individual and situation around him.

Ben battles daily to live, but does it with a contagious optimism. As the older brother to such a severely handicapped person, I have experienced an entire spectrum of emotions concerning Ben – ranging from fiercely protective to unabashedly frightened and sad for him.

While my emotions are often fluid and sometimes unsettled, Benjamin’s attitude and smile are unflappable. It is often at his most physically debilitated and challenged that Ben’s love, courage and uplifting spirit manifest his divine power

.”

~ Jeb

Ligums

Slide24

Profiles in courage

Our patients and their families are

BRAVE and

RESILIENT

!

We

learn from them everyday

We must

do more

to support this population in our community!

Slide25

“Looking back on everything, I realize that I am truly blessed and I am truly loved. My life is great now and its only getting better. While I was writing this and thinking back on everything, I now know my purpose in life, and I’ve learned that every surgery, and there were twenty, every trip to the hospital and every hard hit I endured made me the person I am today. If it wasn’t for this life changing, I wouldn’t have met all the incredible people that are in my life today. I don’t sit back and let life happen, I make life happen. I’m in charge of my own destiny and I choose what I do with my life.

My name is Rosalie Salas, and if you take just one thing from this, I want you to take this: never hide who you are or what you’ve been through. Be proud of who you are and what you’ve endured.”

Rosalie Salas

Everybody has a story, this one is mine

Slide26

Slide27

Pro Bono presentation design and execution by Unbridled Communications.