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t m c » p u l s e | s e p t e m b e r 2 0 1 9 28 Treating Adults with Intellectual Disabilities Improving the transition from pediatric to adult care A llison Rosenberg has been living independently since 2011. As an adult with mild cerebral palsy, the 27-year-old requires regular medi- cal care from a team of providers. Like one in every two indi- viduals diagnosed with cerebral palsy—which affects a person's ability to move and maintain bal- ance—Rosenberg has an intellectual disability, as well. But accessing high-quality, affordable health care as an adult with an intellectual disability is a challenge. Rosenberg aged out of the pedi- atric care and physician she grew up with when she turned 18. "Me and my parents did research, and we wanted to find a doctor who knew about my con- dition and was willing to help," Rosenberg said. Their search led them to Baylor College of Medicine's Transition Medicine Clinic, launched and led by Cynthia Peacock, M.D. The clinic provides care and support to young adults with intellectual disabilities living in and around Houston as they shift from pediatric to adult care. "About 85 percent of the popu- lation of people who have intellec- tual disabilities have a mild level of intellectual disability," Peacock explained. "Even though we have individuals in our clinic who have a mild intellectual disability, we tend to target the ones who are more complicated. They tend to have more health care issues as well, so they have complex care." Every year in the United States, more than 500,000 children with special health care needs turn 18 and transition to adult-oriented providers. While the life expectancy of individuals aging with intellectual disabilities is increasing, it is still lower than the general population, particularly for individuals with more severe intellectual and phys- ical disabilities and certain genetic syndromes, according to expert tes- timony provided to the U.S. Senate Committee on Aging. "Most people with an intellec- tual disability may have a problem recognizing that they have a health care issue and they need regular check-ups—maybe even more than the regular person—just to make sure those health problems are getting recognized," Peacock said. "Health care systems aren't set up for taking care of people with intel- lectual disabilities. Is the facility wheelchair-compliant? Can the patient get onto an exam table that meets the requirements for a wheel- chair? Many times they don't get the exam they need and, depending on the severity of an individual's disability, they may not be able to communicate with a health care pro- vider, so they have to rely on their families or caregivers." Peacock also points out that peo- ple with intellectual disabilities are not dying from the same things the general population is dying from, such as heart disease and cancer. "Their deaths aren't related to what we normally think of," she said. "It's more related to infections— people not recognizing them early on to get them treated—pneumonia and death related to a seizure disorder. Providers need to realize their mor- tality is earlier and that the morbidity that they are dying from is different from the general population." Rosenberg, who sees Peacock for a regular checkup every six months, appreciates the relationship she and her doctor have built. "My mom or my dad or both will go with me to doctor appoint- ments, but usually my dad because he can lift me," Rosenberg said. "I like going to Dr. Peacock's office because they don't always ask the person sitting next to me the ques- tions. They ask me personally, which I like. A lot of doctors assume peo- ple with disabilities can't vocalize so they turn to the care person that is with them. It bothers me." B y B r i t n i R . M c A s h a n Allison Rosenberg is a patient at Baylor College of Medicine's Transition Medicine Clinic.