Mrs. Perry Binet is a mother of two boys with Glycogen Storage Disease (GSD) untyped, a rare metabolic liver disease that causes hypoglycemia and other issues.

Tzvi’s and Sruly’s condition prevents their liver from converting carbohydrates into energy, or from storing sugar for future use. There is no cure for this disease. However, corn starch, an “extended-release sugar,” is the only treatment that sustains blood sugar levels and metabolic stability. The boys need specifically dosed corn starch feeds precisely every three hours to keep them from becoming hypoglycemic. Mrs. Binet, and her husband Moti, took care to do this, of course, around the clock, because skipping or delaying a feeding can result in extreme medical complications.

Mrs. Binet learned that a Dexcom device, which is a small device that automatically and continuously checks sugar levels, alerting a connected phone with any emergencies, could help with her sons’ challenges.

Denial after denial, Mrs. Binet was told that insurance does not, will not, and could not cover her sons’ Dexcom devices, because insurance only covers it for Type 1 diabetics, a condition her sons did not have.

After multiple denials and persistence with all levels of insurance hierarchy, the Binet family was inexplicably approved for the Dexcom device for one of their children. Mrs. Binet’s focus turned to advocacy. “While our family was ultimately successful in receiving it, many other families are not as lucky. They either fight a losing battle or give up,” she said. “We shouldn’t need to wait for a child to die to pass a law in their name. We know that this is an issue and we know how we can help fix it.”

In Albany, as part of Agudah’s advocacy trip yesterday, Mrs. Binet had the opportunity to share her story and her passion with lawmakers and their staffs, advocating for a much-needed law that would mandate insurance coverage of Dexcom glucose monitoring machines for people with forty-five other conditions who are not diabetic.

Mrs. Binet’s story was only one of many that led Agudath Israel to convene a special advocacy trip to Albany, on behalf of the special needs and special education communities. The Agudah has been advocating for these communities for many years through its Project LEARN division. This mission was an opportunity to bring an exclusive focus to the specific issues facing these communities.

Agudah’s advocacy group comprised over twenty parents and advocates who spent the day in the Capitol meeting with lawmakers and government officials. Throughout the meetings parents shared their personal experiences with lawmakers who were clearly impacted by the commitment that was shown and by the challenges the special needs community face.

Some children, like Tzvi and Sruly, need lifesaving medical equipment. Others suffer from a shortage of service providers. This was another focus of Agudah’s advocacy in Albany yesterday.

One of the obstacles keeping people from becoming Direct Service Providers (DSPs) is that every provider needs to be fingerprinted for every agency they work for. That means that if a provider – who has already been fingerprinted for multiple other agencies – is asked to temporarily fill in as a provider for a different agency, he or she cannot do so until they are again fingerprinted, and receive the results, which can take several weeks.

A simple solution has been proposed for this issue: Provide all agencies with access to the central state database. Once a person is fingerprinted for the very first time, any agency would be able to check the database and ascertain that the prospective provider has a clean record. This would help families with children who have special needs access the care they require.

Agudah’s representatives, and the parent and community advocates, discussed this issue, as well as others, with the representatives they met, who included Senators Joseph Addabbo, Simcha Felder, Peter Harckham, and Shelley Mayer, and Assemblymembers Simcha Eichenstein, Aileen Gunther, Andrew Hevesi, Helene Weinstein, and David Weprin, and staff from the offices of Senators John Liu and Jessica Scarcella-Spanton and Asemblymembers Stacey Pheffer Amato and Chris Eachus. A special thanks to Assemblymember Nily Rozic for hosting this important group. The delegation also met with Terry Prat, Assistant Counsel to the Governor; Alyson Grant Tarek, Assistant Secretary for Human Services and Mental Hygiene; and Michael Mastroianni, Assistant Secretary for Education.

“This visit to Albany was special. The feelings expressed by the parents and advocates clearly made an impact on our legislators,” said Rabbi Yeruchim Silber, director of NY government affairs.

“It was an amazing experience to be able to bring parents to Albany to share their stories directly with lawmakers,” said Miss Tova Wacholder, director of YahalomNY, Agudah’s resource center for families of children with special needs. “We appreciate the parents who made the effort to meet with our legislators in Albany. When government officials hear reports directly from them, it is so much more meaningful.”

“I am very appreciative to the Agudah for organizing this important mission, a direct line of communication between parents, advocates, and legislators,” said Yehuda Gelman, CEO of Highway of Hope, who joined the Agudah in Albany yesterday. “I am confident that these meetings will lead to real change for many families.”