A voice for Jessica

Joan Baizer’s daughter didn’t talk when the other kids started talking.

At 1 year old, Jessica smiled but didn’t speak. Baizer, now a professor of physiology at UB, had noticed that almost from the time her daughter was born, her developmental milestones were not met on time.

“At six months, she had not yet rolled over or sat up,” Baizer says. “From then on, I was trying to understand why.”

It was a question that Baizer would be seeking an answer to for many years.

Baizer was hired by UB in 1976 and had received tenure by the time her daughter was born in 1987. The following year, seeking to make changes in the direction of her research, she arranged a sabbatical at the National Institutes of Health.

“I knew the people whose lab I was going to, and I knew that they had a young child,” Baizer says. “I wanted a work environment that would be amenable to the demands of being a mom.

“During that year it was clear that Jessica was still not developing normally. I also wanted to find appropriate programs and therapies to support her cognitive, social and motor development.”

Once she returned to Buffalo, Baizer was able to get the first of many diagnoses for Jessica, trying to figure out the reason for her developmental delay.

“Jessica didn’t talk at all till she was 2, and she didn’t walk until she was 3. She had her first seizure at 4,” Baizer says. “Her doctors then thought she fit the description of Hypomelanosis of Ito, a very rare neurological disorder. Jessica’s diagnosis has changed many times since then, based on advances in genetic discoveries and the expertise of physicians at the Cleveland Clinic.”

Jessica entered school through the former Language Development Program (LDP), which is now The Summit Center. While she was enrolled at LDP in the morning, Jessica spent her afternoons at the UB Child Care Center, a setting in which she could be with typical peers.

Later, for a short time, Baizer tried including Jessica in the Buffalo Public Schools.

“As Jessica got older, she started having more seizures, along with challenging behaviors such as hitting, refusing requests, kicking and pulling hair,” Baizer says. “This became very difficult during her adolescent years. You are trying to manage someone who has the hormones and body of a teenager with the self-control of a 2-year-old.

“During this period of Jessica’s life, I was also carrying a full teaching load. My teaching has long been informed by my experiences with disabled children. My lectures to medical students include discussion of cerebral palsy, and lectures in a pathophysiology course include coverage of epilepsy and other developmental disabilities.”

Caring for Jessica severely limited Baizer’s time. However, it was also during this period that she became an advocate for Jessica and individuals living with developmental disabilities. It is a cause that she has been deeply involved in for more than two decades.

“The disabilities world is not one that I knew anything about,” Baizer says. “But that changed and I was drawn in as Jessica’s needs changed. All of my interest and involvement in advocating for the developmentally disabled stems from her.  

“As she grew up, whenever there has been an opportunity to advocate for Jessica and her peers, I have always gotten involved. I wanted Jessica to be included in programs with typical peers and not segregated in disability-only settings.”

From 1994 to 1998 Baizer served as a parent advocate on the Committee on Special Education for the Buffalo schools. She saw it as an opportunity to advocate for inclusion for Jessica and others living with a developmental disability.

“Individuals who live with developmental disabilities have the right to live in and move about in the world as their nondisabled peers do, according to their likes and dislikes,” Baizer says.

“It means the right for Jessica to live where and how and with whom she wants — with friends or alone — to eat healthy, well-prepared food that she likes, to spend her days doing something useful or enjoyable and, especially, to be able to be in the world where and how she wants.”

By the time Jessica was 16, and with the assistance of then New York Assembly member Sam Hoyt, Baizer was able to place Jessica in a New York State Individual Residential Alternative (group home). The move changed both her own and Jessica’s lives: Their time together became more meaningful and also permitted Baizer to focus more attention on her research.

During this period, Baizer advocated for the developmentally disabled as treasurer for the Schools are For Everyone inclusion advocacy group of Western New York, and as a member of the Special Needs Committee of the Jewish Community Center of Greater Buffalo. Over the next seven years, she also served on the Special Education Parents Advisory Committee dedicated to supporting families and services as advisers to the Buffalo Board of Education on issues of special education.

“For many years, I had been involved with a group of families who also had daughters that were living with developmental disabilities similar to Jessica’s,” Baizer says. “Working together, we were able to develop an Individual Residential Alternative (group home) through People Inc. so that our daughters, who had known each other for many years, could live together.”  

In 2002, Baizer became a member of the New York State Office for People with Developmental Disabilities (OPWDD) subcommittee of the Erie County Mental Hygiene Community Services Board. She remains a member of the OPWDD subcommittee.

Jessica is now 28 and is now diagnosed with cerebral folate deficiency/autoimmune epilepsy. Through her advocacy, Baizer continues to work toward providing opportunities for Jessica and other Western New Yorkers living with developmental disabilities to be in the world and with their age peers.

“I am also very interested in raising awareness at UB,” Baizer says. “I was involved with People Inc. in getting the Young Adult Life Transitions (YALT) program started at UB a number of years ago. It is run by People Inc., and is presently housed on the South Campus.”

YALT provides opportunities for adults with developmental disabilities to experience life on a college campus while developing skills to enable them to hold jobs and live independently.

Acknowledging YALT’s success, Baizer thinks more could be done. “In addition to YALT, members of the developmentally disabled community would greatly benefit from increased opportunities at UB for employment, volunteering and internships,” she says.