Helping Adults with Developmental Disabilities Find Appropriate Health and Mental Health Services: S

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Helping Adults with Developmental Disabilities
Find Appropriate Health and Mental Health
Services Some Interesting Discoveries Along the
Way

• By
• Arnold Birenbaum, Ph.D.
• Associate Director, Rose F. Kennedy UCEDD and
  Professor of Pediatrics, Albert Einstein College
  of Medicine, Bronx, NY

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Health Care Transitions
1. Improvements in medical technology has lead to
increased survival rates among children diagnosed
with special health care needs and disabilities
(HRSA, 2001).2. Problems transitioning to
adulthood are magnified with chronic health
problems. Furthermore, adolescents with severe
developmental and cognitive disabilities require
special consideration pertaining to their lack of
medical independence and enhanced reliance on
parents or other caregivers. ( Betz and Nehring,
2007, p.4, Promoting Health Care Transitions for
Adolescents with Special Health Care Needs and
Disabilities).
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This report is compatible with the national
objective established in the recently published
the Future of Disability in America, IOM

rec
We took a preliminary step to Promote models of
coordinated chronic care and other strategies for
improving the transition of young people from
pediatric to adult care (p.8)
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Transitioning to Adult Life for Individuals with
Intellectual Deficits 1. Often a loss of
their usual source of care. 2. Sometimes even
when a medical home is maintained, the provider
of specialty care to an 18-24 year old is a
developmental or neurologic pediatrician. 3.
Primary care sometimes may continue with a
pediatrician as reported in our telephone
survey. 4. Some adult medicine primary care
providers may not have sufficient experience
with a population with ID and may be unaware of
health problems prevalent with this
population. 5. National studies report that 30
of adults with ID that are characterized by Down
syndrome and cerebral palsy have health problems
that require additional screening.
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Quality Improvement Project at RFK
UCEDD1.Project Goal Connecting young adults
with ID and other DDs to an appropriate adult
specialty care provider2. Methods employed to
identify 18-24 year olds a. 1000 on clinic
rosters at CERC b. 50 had no clinic
appointments during last 18 months c. 3
possible relationships with health care system
continued to get their specialty care at CERC
were receiving appropriate developmental care
from an adult provider had no developmental or
neurology care provider. d. If still seeing a
pediatric specialty provider or had no adult
provider we would connect them to adult clinics
in the Bronx or Manhattan (NYS Article 16
clinics).
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Full Disclosure
Funding from the NYC DOHMH came with a quid pro
quo We had to do a CQI project every year Now in
our 4th year WE WERE ABLE to Do AN INDEPENDENT
PROJECT Clinicians at CERC wanted a Transition
Project NYC DOHMH Required a Full Understanding
of What Prevents Adult Patients from
Transitioning Appropriately THE FISHBONE
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Root Causes
No policy of CERC on relocating aging-out
patients to appropriate adult services
Concrete obstacles
New transportation pattern
Limited Adult Health M.H. services available
Limited information on the part of clinicians
Different hours
Less Providers in adult health M.H. System
trained to care for people w/DD
Still need CERC special care dentistry
Parent lack information
Inexperienced providers
Wait between scheduled actual appointments
Not all service in one location
No connector to adult services
Stigma attached to sponsoring agency e.g. AHRC
Failure to transition to adult health Mental
Health Services
Parents are routine oriented
Difficulties in establishing a new relationship
Insufficient emotional investment in child as an
adult
Parents reluctance to leave CERC
Record transfer issues
Ambiguity as to who should communicate parent
or child
Not socialized to self-determination language
Fear of upsetting adult child
Limited management skills
Inadequate motivation
Patient stress increased by transitions
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Procedures Undertaken to do this Needs Assessment

• Letters went out to clinic patients in batches of
  100, alerting them that an interviewer would call
  within two weeks. Few letters came back
  undelivered.
• Calling was another matter. For the first 402
  letters, few calls were completed. (Less than
  25)
• THE CELL-PHONE REVOLUTION HAS MADE TELEPHONE
  INTERVIEWING PROBLEMATIC.
• a. Wrong Number 120 b. Unable to complete 136

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• RESULTS
• 1. Completed interviews 88
• 40/88 needed referral and 30/40 accepted the
  intervention
• 3. Intervention was name, address, telephone of
  an adult clinic in the Bronx or a list of all
  adult clinics in the Bronx
• 4. We check back with families we spoke to in
  June/July/August EVERY 2 WEEKS to see if they
  made an appointment none as of 11/1/07

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The Corrections

• Revised letter to request an updated telephone
  number. Received a few calls.
• Included a Spanish-language letter.
• Learned about Cell-phone usage 1. Dont answer a
  call from a number you dont know in order to
  avoid incoming call charges 2. Save answering
  and calling for off-peak hours.
• We made calls on week-ends and after 9pm.
• We called 3 times before giving up.

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THE GETTING OF WISDOM 1. Half of the original
list of adults (18-24) were not seen at CERC
during 2006 and 2007. Might be useful to do a
similar comparison among young patients regarding
date of last visit to determine their service
needs. 2. Some adults might return. We learned
that a majority of former CERC patients would
use adult specialty service at CERC if we created
one. 3. The NYS OMRDD licensed Article 16
Clinics are reaching large numbers of adults.
4. CHALLENGE Creating an adult specialty
service at CERC would have to built on care not
available elsewhere.