Download Why transition to adult service system?

A Medical Home is not a HOUSE,
but everyone needs one.
Transitioning from
pediatric to adult healthcare
Andrea Videlefsky, Medical Co-Director
Adult Disability Medical Home
Objectives
 Transitioning to adult care - fragmented and difficult to
access.
 A best practice model of the Patient Centered Medical
Home which places the needs of patients at the center
of healthcare services.
 A holistic approach to care for successful areas of
health, wellness, living and recreational options.
 Strategies for a medical partnership
Healthcare for Adolescents and Adults
with Developmental Disabilities
The healthcare needs of Adolescents and Adults
with developmental disabilities are often neglected
as they transition from one system to another.
Why transition to adult
service system?
 Individuals age out of the pediatric
system
 Individuals with developmental
disabilities are living longer and age
differently than the general population.
 Individuals encounter a variety of health,
psychosocial and behavioral issues as
they transition to adult services in their
community.
 Access to services is often limited.
 There is limited expertise in dealing with
complicated health and social issues
TRANSITION TO ADULT SERVICES
Transition process to adult care –
fragmented and difficult to access
There are no/few currently established clinical
guidelines for adult care of patients with
developmental disabilities
An Interdisciplinary Team is needed to address the
health, psychosocial and behavioral conditions
encountered by individuals transitioning to adult
services.
Healthcare needs are best served within the
framework of a Patient Centered Medical Home
What is a PCMH?
The ADMH Healthcare Team
Healthcare is provided by a team including the physician,
nurse/medical assistant, front and back office personnel,
social worker, behavior analyst, and family counselor with
referrals to other specialists, psychologists, patient advocates,
nutritionists as needed.
The ADMH Healthcare Team
physicians
Social
worker
dietitians
Support staff
Behavior analyst
Family counselor
Medical assistants
THE PATIENT
Clinic Director
Patient advocate
Patients are seen by the team; appointments are
comprehensive and last 2-2.5 hours. Labs and x-rays are
available on site at the time of the appointment.
THE PATIENT
is an essential member of this team
Piecing it all together…
When to transition to
adult services
 Age 14 to 16 - timing with transition plan for
IEP
 Age 18 – when individual accesses adult services
(no longer Deeming Waiver Medicaid)
 Age 21 – most medical services no longer accept
individuals in pediatric practices, hospitals and
therapists
 Examine family insurance plans and exceptions
within the plan
Bridge of Transition
 When individual leaves the educational system,
a plan should be in place
 Time of crisis for the patients and their
caregivers
 We have learned that we can develop a bridge
of transition by working with
pediatricians/family physicians in the years
leading up to this major change
 The planning needs to start in the teen years
and needs to be a gradual process.
How to transition
 Interview - Come up with set of questions to
interview potential practices and specialists
 Need to know
 Insurance
 Knowledge of clinician
 Team and services
 Location
 Gather records with diagnoses, treatment plans,
immunizations, and lab results (within last 18
months)
Issues to consider
Futures Planning
 will
 guardianship
 special needs trust
 residential planning
 waivers
 work options
Autism Spectrum Disorders
 Autism is a neurodevelopmental disorder of
unknown etiology
 Characterized by social and communication
deficits and the presence of restricted
interests and/or repetitive behaviors
 Communication issues and heightened
sensitivity to touch make it more difficult
for patients with autism to receive a good
clinical/physical exam.
HEALTH ISSUES IN PTS with AUTISM
 The prevalence of ASD is 1 in 68
 There are currently 55,000 young adults with ASD
transitioning from Pediatric to Adult care each year
 Most common co-morbidities include
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GI disorders
Mental health issues
Seizure disorders
Co-morbid dual diagnoses:
 Down syndrome
 Tuberous sclerosis
GI Disorders
 Chronic constipation
 Chronic Diarrhea
 Irritable Bowel Syndrome
 Inflammatory bowel disorders
 GERD
 Researchers have also noted an association between GI
disorders and severity of Autism
Mental Health Issues
 Depression and anxiety
 ADHD
 Bipolar Disorder
 OCD
 Tic disorder
 Catatonia
 Psychosis
SEIZURE DISORDER
 10-30% of individuals with autism have a seizure disorder
 5% of children who have epilepsy will go on to develop autism
 Individuals with autism and untreated seizure disorder have a
higher overall morbidity and mortality rate
 Recognizing the symptoms of possible seizure disorder
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Staring spells
Stiffening of the muscles
Involuntary twitching of muscles
Unexplained confusion
Severe headaches
Regression in development
Marked and unexplained irritability and/or aggression
Sleep disorders
SEIZURE DISORDER
 There are 2 peaks in the age of onset of seizures in patients
with ASD
 Early Childhood
 Adolescence
 Seizure disorder in association with ASD is more common in
females
 Patients may have subclinical epileptiform abnormalities on
EEG without overt seizures.
Other Health Issues
 Sleep disorders including sleep apnea
 Hypertension
 Obesity
 On a more positive note, adults with autism are
much less likely to smoke, drink alcohol or use
illicit drugs.
2016 update from the CDC
 Prevalence of ASD is 1:68
CLINICAL CASE STUDY:
15 year old male
PMH:
Down syndrome
Diabetes Type 1 – on an insulin pump
Celiac Disease
Presented with a sudden change in behavior
Regression
Poor sleep
Loss of interest in activities
Decrease in communication
Issues to consider:
Puberty
Normal teen behavior
Poorly controlled diabetes
Dual diagnosis of Autism
Associated diagnosis of Depression
Rule out seizure disorder
Rule out hypothyroidism
Clinical Evaluation
15 year old male
Start with a good history and a
Comprehensive Clinical Exam
Check appropriate Labs including a CBC, CMP, lipid panel, Thyroid
panel, testing for celiac disease, HbA1c, B12, folic acid levels,
Vitamin D
Additional Testing and co-ordination with specialists:
Referral to neurology for neurological evaluation, EEG and/or CT
scan or MRI if needed;
Consider lateral neck x-ray for atlanto-axial instability
Behavioral Interventions
Trial of medications
Preparing Your
Family Member
 Address anxiety - Talk about transition
 Plan
 Visiting new surroundings
 First visits may need to be divided into
smaller ones
 Capability to self-care
(medications, follow-up)
 Ability to communicate needs and concerns
Tips: a good medical
partnership
 Gather requested information including all
questionnaires before your visit
 Come with YOUR list of concerns
 Be on time
 Know family history (may affect requested labs)
 Expect a comprehensive physical examination – this
may be defined differently within your insurance
More Tips: a good medical
partnership
 Scheduling – Remind the schedulers that your visit
may take longer or more frequent visits
 Look at deductible clauses within insurance (even
Medicare)
 Complicated –
 Don’t expect everything to get addressed on visit
#1
 Be willing to come back
 Keep good records
Services include detailed
discussions with the
individual, family members
and caregivers centered
around the following issues:
• Educational and Vocational issues •Behavioral Management
•Transition to Adult Services
•Life planning
•Changes in Medical Symptoms
•Aging
•Changes in Behavior
•Concerns about loss of function
•Medication Management
•End of Life Planning
Group Visits
Nutrition Workshop
SNAPSHOT OF OUR CLINIC:
AGES SERVED: approximately age 12 or early teens – aging population;
currently our oldest patient is 70 years old.
FOCUS and FREQUENCY: patients transitioning to adult services or
searching for physicians with expertise that accept insurance.
We accept Medicare and Medicaid at our clinic.
50 – 60% of patients seen choose Urban Family Practice as their
MEDICAL HOME for continuing primary care. We are a private,
community based Family Practice
AREAS SERVED:
Greater metropolitan Atlanta, statewide and neighboring states.
FUNDING: We are a 501c3 non profit and are supported with grants and
donations to supplement the ongoing needs of the clinic.
Summary: Lessons Learned
• All patients will face TRANSITION
• We need to address the needs of
patients aging out of/into or within a
supported system
• This is best achieved by provision of
care within a PCMH Model
• Develop a bridge of transition
Our Team
Medical Co-Directors:
Andrea Videlefsky, MD
Jeffrey Reznik, MD
Clinic Director:
Janice Nodvin
Clinical Social Worker:
Marlene Sukiennik, LCSW ACSW
Behavioral Analysts:
Kathryn Walser, MEd, BCBA
Manuela Woodruff, MS, BCBA
Dietitian:
Julie Taube, MS, RD, LD
Thank you
Andrea Videlefsky
[email protected]
www.theadmh.org