Hope is to improve services for developmentally disabled people
By Victoria Colliver
San Francisco Chronicle
Clinton Rutland can remember the dates of his upcoming doctor appointments, knows how to test his blood sugar levels to monitor his diabetes and likes to have salad before he goes to bed.
“And walking. Walking is going to help my weight even better,” he said one day this month during a visit to The Arc San Francisco, a nonprofit that helps adults with developmental disabilities find work, maintain their health and live as independently as possible. Rutland, 66, is a regular, long-term client of The Arc, which helps him manage his health care needs.
The health management services are particularly important to him. While children with Down syndrome, autism, cerebral palsy and other disabilities often have access to a range of health services, they typically lose those when they turn 18. As adults, if they don’t have a family member or someone close to them to help them navigate the system, their health often suffers. Sometimes they may see physicians who don’t have the time or experience to manage their needs.
As part of a new effort to address those issues, the U.S. Centers for Disease Control and Prevention selected The Arc of the United States, a national organization that has been helping adults with developmental disabilities for more than 60 years, to take part in a three-year, $1 million project to collect health data on their clients.
One of five chosen
The Arc San Francisco was selected as one of five of The Arc’s 700 sites nationwide to pilot the study, called HealthMeet, the goal of which is to help address the gaps in the health system that lead to poorer outcomes and shortened lives of adults with cognitive impairments. Other Arc sites chosen for the project are New Jersey, Massachusetts, North Carolina and the Pittsburgh region.
The Arc San Francisco, which serves 650 clients in San Francisco, Marin and San Mateo counties, started the project April 17 by holding its first “Wellness Wednesday,” daylong health screenings at the San Francisco center to collect data on weight, blood pressure, vision, hearing, oral health, mobility and lifestyle factors such as smoking and alcohol consumption. The group eventually plans to go to other support centers in San Francisco, San Mateo and Marin counties to gather data.
“We want to get as much information as we can about folks like yourselves so we can inform the medical community in future years so you can receive the best medical care you can get,” Glenn Motola, chief executive officer of The Arc San Francisco, told a crowd of about 70 clients and family members gathered for the first Wellness Wednesday.
Filling a need
The Arc San Francisco offers health and wellness services to clients, including a program that pairs them with volunteer advocates who can help them deal with their health needs. It fills a vacuum, because even in San Francisco, no health clinic specializes in treating adults with cognitive impairments.
“There are very few training programs – almost none in medical schools or advanced practice nursing – to train health care providers who work with people with developmental disabilities,” said Gerri Collins-Bride, clinical medical professor at UCSF’s School of Nursing who specializes in treating patients with cognitive disabilities.
Collins-Bride said treating someone who is difficult to understand or may not even talk is a challenge. “They may need more physical exams or diagnostic tests because they can’t tell you what’s going on,” she said. “They may not use words, but people are always communicating.”
In some cases, the disability itself may lead to health problems, said Dr. Megie Okumura, an assistant professor at UCSF who studies the health needs of developmentally disabled people as they age. People with Down syndrome, for example, are at greater risk for hypothyroidism and congenital heart disease.
But in many other cases, she said, care may be delayed because patients lack someone in their lives who can identify subtle changes in behavior that may actually be signs of a health problem.
Studies show that more than half of those with intellectual disabilities may be considered obese and that oral health problems are two to seven times more likely in this population. Yet, a 2002 U.S. Surgeon General’s report found that they receive fewer checkups, don’t always get routine immunizations and are less likely to exercise.
During The Arc San Francisco’s screening, alternative testing options are offered. As part of the eye exam, for example, clients can choose an eye chart with either the standard letters or one with pictures such as a star or a heart.
In the case of Rutland, who has a job recycling old files for the city of San Francisco and is able to remember a number of dates and details that could challenge many people without a disability, a hearing test still had to be modified so he could complete it.
Initially, a nurse asked him to repeat a series of letters and numbers, such as P, 3, M. Although he seemed to hear all three characters, Rutland repeated just one, typically the first or the last. When the test was changed, to ask him to repeat words – like “pizza” – instead of abstract letters or digits, the nurse found Rutland could do the test.
Although people with disabilities have shorter lives than most people due to inequities in care, they are living much longer than they used to because, like everyone else, they are benefiting from improvements in the medical care they receive.
“We have adults with disabilities having diseases and conditions of growing older,” said Marti Sullivan, The Arc’s director of development and community relations. “We haven’t had that before.”
Victoria Colliver is a San Francisco Chronicle staff writer. E-mail: email@example.com