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A Parent Advocate’s Hard-Fought Journey

Throughout Daniel’s life I have advocated for my intellectually challenged son on the autistic spectrum. My journey began early in Daniel’s life, as the parent of an adopted infant from Peru. I have learned throughout Daniel’s life that advocacy is an art that requires flexibility, networking and at times outright doggedness. During my journey I always understood the importance of passion, confidence, and a larger vision based on Daniel’s special abilities. But I also had much to learn to become informed and effective. Advocacy requires learning how the system works and taking advantage of all the avenues within it to advance your child’s well-being as well as to create system change. Successful advocacy requires a multi-pronged approach using strategies both inside and outside of the system. Daniel’s school age years required using different strategies than as a young adult faced with less available resources. Step by step, evaluating my options and networking with others, I “kept on keeping on” until I reached successful outcomes for my son. Follow along with me on my long and twisted journey as a parent advocate.

Dani and Renee marching for Peace in Cambridge, MA

Dani and Renee marching for Peace in Cambridge, MA

My initiation into the world of special education advocacy began when Daniel was in the first grade. He was struggling learning to read. Daniel’s IEP team was unwilling to provide him with additional reading help. I went to the state Bureau of Special Education Appeals, representing Daniel without a lawyer. I was told that the odds for parents winning were almost nonexistent. Undeterred, I used the Hearing Officer of this appeal as my resource to inform and assist me with the process. The officer made a favorable finding. Daniel received reading practice before school with his classroom teacher as well as additional extended summertime services. This early success spurred me on to further advocacy.

In 1997, the Massachusetts state special education standard, “maximum feasible benefit” (Ch. 766) was under attack, substituting the more limited federal standard of “free and appropriate public education.” Together with hundreds of other advocates, educators, and special needs parents, I testified at a hearing in the Massachusetts State House, citing my son’s experience. In this lobbying experience, I witnessed how the power of advocating together with those with similar interests can reverse power dynamics. A decade later, parent lobbying helped pass the legislative Autism Omnibus law in August of 2014. It expanded the Department of Developmental Services (DDS) eligibility criteria for individuals with autism and those on the autistic spectrum. My participation in these hearings inspired me to seek change within my Cambridge SPED system.

In Daniel’s second grade I became the local Parent Advisory Council (PAC) parent Co-Chair for Special Education. It gave me a network of parents experiencing similar problems with their children. I became acquainted with various parent advocacy groups, including the Massachusetts Federation for Special Needs. The Federation offered a parent training on state special education regulations. Armed with training, I began advocating for other students. I consulted a seasoned advocate, a founder of Ch. 766 and the Federation, who informed me how to evaluate the Cambridge SPED programs using the federal Department of Education. Her contact initiated a federal Review finding more than twenty major noncompliance issues throughout Cambridge schools. How special education students were inappropriately referred, disciplined and not placed in the least restricted environment were discussed. Subsequently, the Massachusetts Department of Education threatened to withhold special education entitlement money until Cambridge satisfied federal and state SPED requirements. The PAC then requested a public hearing by the School Committee to address the findings of the review. Parent after parent testified, bringing noncompliance issues to life in a packed room. This hearing forced the early retirement of the SPED Director of thirty years who gave little support to parents. I represented the PAC for the hiring of a new director committed to addressing noncompliance issues. Major changes parents advocated for were initiated across the school system.

System reform is an exceedingly slow process. It didn’t happen soon enough to address Daniel’s specific needs. Daniel continued to fall behind his peers academically and socially by two years. I considered an out-of-district private school placement for Daniel’s fourth grade year and initiated legal action. Mediation was offered as a first step by the system. I went alone to the mediation as my lawyer confided that no one had been successful against Cambridge’s SPED director. Ironically, my advocacy was responsible for my success in obtaining an out-of-district private placement at Landmark School. Written into the mediation agreement, I was “to cease all advocacy for special education students in the Cambridge public schools.” The director agreed to send Daniel to Landmark, in exchange for eliminating my effective advocacy for Cambridge students. I immediately violated this agreement continuing to advocate for students.

As Daniel aged, his difficulties communicating became more apparent. After a good year at Landmark, he developed behavior problems in response to unmet needs. Landmark was no longer a “good fit” and he was told to look elsewhere for middle school. Researching programs, I found an academically self-contained program within an inclusionary model in a Newton school that Daniel’s team agreed to. Beginning in Daniel’s 6th grade, this move coincided with the sudden tragic death of Daniel’s dad, my partner, while playing on the Cambridge Community basketball court. Daniel’s initial honeymoon allowed him to learn new skills of sign language, gardening and basketball. His delayed response to his dad’s death slowly surfaced difficult behavioral responses both at home and at school. Once again, I had to find another school placement. I became an overwhelmed single mother. Daniel required more overall support than I or the public school could provide. Multiple school placements had taken a toll on Daniel. His greatest need now was a school that would see him through high school graduation. Once again, I spent many months visiting various in-state and out-of-state residential schools with a Cambridge SPED administrator. Using the expertise and presence of Daniel’s neuropsychologist, we argued a strong case for an out-of-district residential placement.

The team sent Daniel to a residential out-of-state school in Pennsylvania. Daniel spent four continuous high school years at The Pathway School. We both navigated many challenges throughout these years. Daniel benefited from Pathway’s emphasis on his positive abilities. Despite the expected ups and downs, it was an overall successful experience that met Daniel’s needs. In his final year Daniel graduated with his high school diploma. Daniel spent an additional couple of years honing his daily living skills at Chapel Hill, a post-graduate program in Connecticut.

As a young adult in his 22nd year, Daniel returned to his hometown to face a desert of resources. After six years of 24/7 supports in out-of-state residential schools, Daniel was unrealistically expected to transition into the community without any supports. I networked extensively everywhere, and I went seeking an appropriate young adult program. Eventually I found a newly formed residential group home operated by the Jewish Family and Children’s Service in Waltham, primarily serving young adults on the autistic spectrum. After a year of meetings with staff and potential residents, I moved Daniel there using my retirement savings. Unfortunately, after a week at this placement Daniel was sent by staff for a psychological hospital evaluation. It landed him inappropriately in and out of hospitals for over a year. Daniel descended into chaos, totally unraveling, bouncing between different hospitals, home, a stabilization unit, and eventually a DDS homeless shelter. I continued advocating for Daniel during this difficult time, writing and calling the state Department of Mental Health (DMH) eligibility officer daily. After many months, Daniel received eligibility from DMH and returned home with a DMH outreach worker providing two hours a week. Feeling alone one evening, Daniel called the police, which initiated an emergency room visit and again he was sent to the hospital. My advocacy became fiercer.

I reapplied to DDS for adult services; the more appropriate state service for Daniel. Again, he was denied eligibility. Using my citizen rights, I contacted my local state representative who made available her legislative liaison to DDS to cut through the red tape; but with no result. In the wake of a feverish nightmare, I stumbled forward. The time had come for an “out of the box” action: a “sit-in” demonstration with my women friends in the Mass Executive Office of Health and Human Services. Within an hour of that “sit-in” the Commissioner of DDS called my state representative saying, “I wasn’t aware that Daniel had developmental disabilities.” Disrupting business as usual, I had finally made enough trouble to be heard. Utilizing my new contacts with an executive office planner and the DDS Commissioner, my extraordinary action got Daniel out of the hospital and into a DDS group home without DDS eligibility. This Boston group home initially gave him a modicum of stability. The absence of appropriate services for two years however was consequential. Daniel lost many of his hard-gained living skills as well as confidence in his abilities. The group home kept him out of the hospital, but part-time non-professional staffers could not provide him with the necessary skills he would eventually need to become more independent. I decided to challenge Daniel’s DDS non-eligibility.

In 2007, using a lawyer from Boston Legal Services, Daniel appealed the DDS decision and lost. At that time, I had no inkling that for multiple years I would mount a marathon struggle involving two appeals for fair hearings and two separate Superior Court appeals. Over six years I acted as Daniel’s pro se lawyer, without formal legal experience. My hope was to create a lifelong support system for my son as well as for other persons who needed similar supports but had been turned down for eligibility and were not in a position to spend years fighting the system.

In a fair hearing I became both his lawyer and a fact witness, calling witnesses, organizing exhibits and writing my final memorandum. The hearing officer’s decision favored DDS. It provided an opportunity to appeal this decision to the Superior Court. A year passed, doing various motions. After I did my final oral argument, to my surprise, the Superior Court Justice ruled in favor of my motion but remanded the case back to DDS with questions. For me, it meant, another round of a so called “fair hearing” with the same hearing officer. Again, he reaffirmed his previous decision. Fueled by anger and reminded of the Superior Court ruling in my favor, I appealed Daniel’s case back to the Superior Court. This time the Court reversed DDS’s eligibility decision in Daniel’s favor. Now as a young adult of 32 years, Daniel has another chance a decade later to begin where he left off at age 22.

During the course of these legal battles, Daniel was slowly developing more independent skills through a day program for successful artists at Gateway Arts and a travel training program offered by the MBTA. Daniel began to act and feel more confident. After a long search I found Step by Step, a private, integrated holistic program with individual apartments where residents hosted peer dinners with staff support. Daniel began regaining his daily living skills within the context of community living. He now has continuity of support services funded by DMH and DDS for his more independent life.

My advocacy journey on behalf of Daniel encompassed many different strategies. I operated on many levels and wove together different approaches at various stages of his development successfully obtaining services for him as well as for others. Throughout Daniel’s life, my vision for him was always for full entitlement of his civil rights and the most independent level of appropriate services. Throughout this long journey I was continually learning new skills and benefiting from the knowledge and support of other parents, advocates, lawyers and friends. Now my Daniel can be all that he can be.

Dr. Renee Kasinsky, parent advocate, can be reached at reneekasinsky@gmail.com.

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