28 The QUEE NS Courier • juLY 7, 2016 for breaking news visit www.qns.com FAMILIES IN CRISIS DENISE AND R.J. By Charlie Perry i cperry@qns.com/@QNS Governor Andrew M. Cuomo signed a 2013 budget proposal that cut $180 million in aid to the Office for People Living With Developmental Disabilities (OPWDD). The Medicaid cuts have left many with limited state and federal programs to meet their needs. We will be running a series of articles following families and their children living in crisis. They are living with developmental disabilities and autism. With a heavy heart, Denise Lombardi briskly and hopefully walked into a Suffolk County courthouse with a manila file folder 3 inches thick clutched under her arm. It was March 3, 2016 and she hoped her diligent, extensive research was enough to persuade the court that her 12-year-old son R.J. should receive funding under the state’s Home and Community Based Waiver Services (Medicaid) to attend classes at the Family Center for Autism (FCA) in Long Island. Hours later she sat in utter shock as a New York Administrative Law Judge, presiding over a fair hearing in Suffolk County, handed down his ruling. She had won! “The Office for People with Developmental Disabilities told me I was wasting my time with a fair hearing, that I didn’t have a chance,” Lombardi said. Her son R.J. would be able to attend his specialized music class at the FCA after all. The state would have to pay the bill thanks to the court’s decision. According to Lombardi, the Office for People with Developmental Disabilities (Office) wants to “protect” people from institutional setting. They want to integrate people living with developmental disabilities into general community programs that most of the time lack staff with the proper training to handle their unique needs, Lombardi said. The rationale of the organization is that people participating in the FCA programming are developmentally disabled which deems it an institutional, isolated and segregated institution. The Courier has requested a statement from the Office but didn’t receive an answer in time for the publication of this article. As a result R.J. was left with few options to be assisted with his s e v e r e a u t i s m after the Office revoked his funding in January. He was diagnosed at 18 months and struggled with his speech ever since. R.J. uses a device to help him speak due to apraxia, an illness that makes it difficult for the brain to plan the movement of body parts needed to talk. He can say small, one- or twoword sentences but has trouble saying anything longer. His mother says his two most used words are his favorite foods: French fries and steak. He struggles in social settings. Lombardi recalls a youth instructor asking her to not bring R.J. back to a program after he bit another child. He was 4 at the time. Since then, R.J. has gone to numerous programs that are geared toward people living with autism and developmental disabilities. He was asked to leave every one of them. School wasn’t much better for R.J. Until the fall of 2015, he had been attending public school and learning in a “self-contained” classroom for three years. In 2014, he transitioned into a new classroom. A few weeks later, everything fell apart. R.J.’s special education teacher told Lombardi he would “allow” R.J. to stay in class, but at the end of the school year, he had to leave. Lombardi soon found herself at an open house at the FCA in Garden City. She bombarded Director of Autism Services Rosemary Barlone- Schafer with questions. Lombardi described R.J.’s behavior and was certain she would be politely asked to leave. “It was the exact opposite,” Lombardi said. “Instead of running away from R.J.’s challenges they were running towards them.” The FCA offered the missing piece of the puzzle in R.J.’s development. According to Lombardi, FCA provides him with the individualized a t t e n t i o n he needs to increase his community integration and socialization. He has learned to communicate his wants and needs in an effective manner. His agitation and frustration have decreased and his overall health and fitness has increased, Lombardi explained. “Prior to the Family Center for Autism, no mechanism existed to enable R.J. to access the opportunities that could assist him in reaching these valued outcomes,” Lombardi said. It finally seemed that everything was falling into place for R.J. — until the Office cut his funding assistance for the FCA. They told Lombardi that the specialized classes at FCA were not covered through the state’s Medicaid because they were not “open to the public.” “The Office spoke to a former employee of FCA, who said she ‘believed’ the center wasn’t open to the public. That’s what they went on when they decided to cut R.J.’s funding,” Lombardi said. For two years, Lombardi battled back and forth with the Office to receive funding assistance for R.J. through Medicaid. Paperwork was lost or never sent to her by the state. A transitional process that should have taken weeks took months. On one occasion Lombardi remembers Photos courtesy of Denise Lombardi RJ Lombardi 12 years old pleading with a Office’s representative to give her more time to send back a form because she had just received it in the mail the day it was due to be sent back to the state. “Please don’t make us start all over again,” she begged. The Office didn’t make her start over, but shortly after the paperwork was complete, they cut R.J.’s funding assistance through their Medicaid. After much soul searching, Lombardi decided it to was time to fight. She requested a “fair hearing” with the Office through the Office of Temporary Disability Assistance. With the help of an attorney, Barlone- Schafer and other staff members at FCA, Lombardi earned her victory by proving that the facility was “open to the public,” and thus covered under the Medicaid. FCA is indeed open to anyone and everyone. Their website states, “The center is open seven days a week to our members and the general public.” The Office continues to treat FCA and other specialized programs around the state as “institutional programs.” Lombardi believes this simple use of language allows them to get around funding these programs through Medicaid. “Sadly, to my knowledge, R.J. is the only one attending FCA who is able to receive funding through the Medicaid program,” Lombardi said. “Let them use my case as a breakthrough,” Lombardi advised families.
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