By Arnold Birenbaum, Ph.D.

1. Helping Adults with Developmental Disabilities Find Appropriate Health and Mental Health Services: Some Interesting Discoveries Along theWay By Arnold Birenbaum, Ph.D. Associate Director, Rose F. Kennedy UCEDD and Professor of Pediatrics, Albert Einstein College of Medicine, Bronx, NY

2. 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).

3. 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)

4. 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.

5. 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).

6. Full Disclosure Funding from the NYC DOH&MH 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 DOH&MH Required a Full Understanding of What Prevents Adult Patients from Transitioning Appropriately: THE FISHBONE

7. 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

8. 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

9. 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

10. 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. Don’t answer a call from a number you don’t 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.

11. 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.