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A Special Bond Leaves Part of an Estate to Carry on Care and Specialized Training

A generous gift from a dedicated mother has helped changed the Dr. Sulkes with patientlandscape of how individuals with developmental disabilities are medically treated and cared for at the University of Rochester Medical Center (URMC). Through a collaborative partnership with The Strong Center for Developmental Disabilities (SCDD) and several community and national organizations, a mother’s long-held wish is starting to come true.

In the late 1980s, state officials, under the leadership of then Governor Mario Cuomo, decided to improve the lives of individuals with developmental disabilities by mainstreaming the 3,000 who were institutionalized into their surrounding communities.

Parents, disability advocacy groups, state officials, and medical professionals started working together to integrate individuals with developmental disabilities into their medical facilities and communities. Nurses had to search through phone books and find primary care physicians who would help them. After going through a portion of the alphabet and cold calling area doctors, nurses were in a state of panic – until they reached “G.”

At the time, John Ghertner, M.D., had a private practice at Williamson Medical, in Williamson, NY, but was also the medical director of Wayne County Public Health. After the nurses pitched him the idea of treating the new patients, he gladly accepted, but only if one condition was met – he wanted them to be treated like every other patient who stepped through his front door.

“I didn’t want them to feel institutionalized again,” Ghertner said.

Without any background or training on how to care for individuals with developmental disabilities, Ghertner began caring for dozens, perhaps hundreds, of adult patients with a “trial by fire approach.” There were many times when he would pay out of his pocket for patients’ flu and hepatitis shots because the state would refuse or Medicaid wouldn’t cover it.

“I could never turn any patients down,” Ghertner said. “I felt I owed it to them and the community.”

Ghertner became particularly close with the Weeks family. Maudie Weeks brought her adult son, Eddie, to Ghertner’s clinic and, they developed a close bond and mutual respect for one another.

Mrs. Weeks dedicated her life to helping Eddie and was very critical of the care her son received in the overall health care system. She felt physicians needed better training to work with individuals with developmental disabilities.

One day, Mrs. Weeks came into Ghertner’s office and declared she was leaving him a large part of her estate. She wanted him to use the money to improve medical training and overall care for individuals like Eddie. “I said that’s not possible, not ethical, and I can’t agree,” Ghertner said. “But there wasn’t anything illegal about it, so there wasn’t much I could do.”

Sure enough, when Mrs. Weeks passed, on January 7, 2003, her lawyer contacted Ghertner. She left $450,000 to him. Although they had spent time talking about her disappointment with health care, Mrs. Weeks had never been explicit about what she wanted Ghertner to do with the money. He felt a large responsibility to both her and Eddie to make the most educated decision that would address the health disparity they experienced and provide adequate training for health care professionals.

After two years of researching where Mrs. Weeks’ estate would have the most impact, Ghertner chose the University of Rochester Medical Center, where he found Stephen Sulkes, M.D., a neurodevelopmental and behavioral pediatrician and director of the Strong Center for Developmental Disabilities (SCDD), who was already working on related projects.

Mrs. Weeks’ contribution has helped SCDD develop its role as a leader in the community, state, and nation and is working to grow its partnerships to establish Rochester and the Finger Lakes region of New York as a model for health care delivery for people with developmental disabilities. The Center is developing training activities for providers, as well as providing support to make caring for people with developmental disabilities no more challenging than any other patient.

In addition to training activities, several other projects have been established, including a successful student chapter of the American Academy of Developmental Medicine and Dentistry (AADMD), the creation of shared tools for community use in communication, behavioral supports, telehealth, etc., the beginning of a data collection effort that will help health and developmental disability provider partners identify regional baselines for health economic information, and much more.

“We really want to get students excited and involved in advocacy, as well as in health care for this population,” Sulkes said.

SCDD has partnered with the B. Thomas Golisano Foundation, one of the Rochester-area’s largest advocates for individuals with developmental disabilities. The organization funds programs that help individuals with developmental disabilities achieve their maximum potential by integrating independence, self-determination, and productivity into all facets of their lives. The foundation and SCDD also take part in the Special Olympics, where health screenings were recently added to monitor individuals’ hearing and vision as part of the Foundation’s Special Olympics Healthy Communities Initiative.

These additions and changes to the Strong Center for Developmental Disabilities will help reach Mrs. Weeks’ goal of training physicians to be better at caring for all people.

“Health care is not just an afterthought in the world of developmental disabilities,” Sulkes said. “The health piece, made possible thanks to Mrs. Weeks’ generous contribution, is budding out in a very exciting way - and it seems to be having a ripple effect, which is great for the community.”

“We are definitely on the cusp of something bigger happening,” Ghertner said. “The work Dr. Sulkes and the Department of Pediatrics have done is exactly what Mrs. Weeks was asking for.”