On the passing of a great advocate and friend (In Memoriam, Dee Alpert)

April 9, 2011 by  
Filed under Advocacy, Featured

This is a very difficult blog entry for me to write because a few hours ago, my friend Dee Alpert’s son called me to tell me that Dee had died suddenly.

Dee and I go back 20 years.  I first met her when I was struggling to get my son the help he needed from his school district but had been getting nowhere.  In desperation, I had pleaded with the national Tourette Syndrome Association that they must know a lawyer I could call for help.

They gave me Dee’s phone number.  And as they say, the rest is history.

For months, Dee would advise me on the phone what to say or do.  For months, I would faithfully follow her advice and call her back to tell her that it hadn’t worked.  Even the request for a due process hearing that she helped me file failed to accomplish anything.

I still remember the night that Dee said, “That’s it.  Time to go to court.”

And go to court we did.  January, 1992 found us in federal court against everyone – my son’s school district, the Governor, and the Commissioner of Education.  I can still picture Dee standing before the Chief Judge explaining what the law said should have happened and what the district hadn’t done and what the state hadn’t done.  She must have done a great job because the judge basically threatened to start throwing people in jail if they didn’t do it and come back to him within hours with a draft of a consent decree to settle the case.  I couldn’t hear everything that was being said because I just sat there crying with relief that finally, finally, my son would get some help.  It was an overwhelming experience.

As a result of that litigation, a few things happened.  First, we got a consent decree that my son’s district would do what they should have done all along.  And thus was born the first public school program in the country for gifted students with Tourette’s and its associated disorders.  That program went on to serve dozens of students in New York State. Many of them never even met Dee in person or knew of her role, but if they had a successful school experience, it was only because Dee Alpert threw her heart and soul and legal skills into getting my son and all kids like him a free and truly appropriate public education.

Dee Alpert making her trademark mouth-pursing expression as she accepts an award from the Long Island Tourette Syndrome Association for her outstanding education advocacy efforts on behalf of our children. June, 1993.

The second thing that happened was that I became an education advocate for the Tourette community to help share what I had learned.  I would go on to be involved in hundreds of cases locally and nationally, with Dee as my backup and resource if I didn’t know or understand a child’s rights.  She was the 800-pound gorilla to my 400-pound gorilla.

Even when I retired from active advocacy for TSA, Dee and I remained close friends and comrades in advocacy arms, teaming up on issues like the use of aversives in New York State-approved education programs.

Dee was the most intense and dedicated advocate I’ve ever known.  She’d obtain massive amounts of research and federal and state documents, digest them, and figure out where things were corrupt or going wrong.  She had the ear of people who could act on her information, although sadly, many times politics trumped the needs and rights of disabled students.

Dee was an active member of COPAA and other advocacy groups and mail lists.  I have no doubt she will be missed terribly on all of them.  I have no doubt that the many parents of special needs children who reached out to Dee and found her an empathetic and caring advocate will miss her terribly.

In a few days, we will get together for our goodbye to Dee.  But it will not be a final goodbye, for Dee will live on in all of us whose lives she touched.  It will be up to us to pay it forward.

Update: So many people are asking about the memorial service for Dee and where to make a charitable donation.  Those details are being worked on and I have created a separate blog entry where I will post that information after Mike finalizes plans.

Update: Jacob Gershman has just posted a piece about Dee in The Wall Street Journal.


15 Responses to “On the passing of a great advocate and friend (In Memoriam, Dee Alpert)”
  1. Paula Solomon says:

    Dee’s impact was felt all the way across the nation. Her work was known here in Northern California. My condolences to all those who were her friends and to her family.

  2. Dee Alpert was an early champion for the rights of children and adults with disabilities. She was there at every New York City hearing on proposed federal and state statutes and regulations, and she always spoke her mind. Dee made sure that she was current on medical, educational, and governmental developments, and she shared that information with anyone who asked for her help. Dee was incredibly generous with her time, her knowledge, and her expertise.

    Dee had remarkable gifts and talents. She could research a matter faster and better than anyone else. Her writing skills were outstanding. Her greatest gift was her ability to bring together diverse concepts and people to develop a new approach or strategy to address a problem. But Dee also knew how to have fun.

    Dee was my mentor, and my friend. I believe that Dee was the first parent and parent’s attorney to become a New York State impartial hearing officer. She encouraged me, as another TS parent, to do the same.

    Dee was there in the middle of the night when I needed information for a brief, and she never failed to call me when she saw a case I had won or a good decision I had written. Personally, Dee was always there to help me navigate the hard times in my own life.

    Dee Alpert was a warrior. She had no tolerance for fraud, falsehood, or injustice. Dee lived the words of the Torah – “Justice, and only justice, shall you pursue. . . ” Deuteronomy 16:20

    I will miss Dee terribly.
    Godspeed, dear friend.


    • Leslie E. Packer, PhD says:

      Ah, Barbara, I’m glad you found your way here. Dee was a great admirer of yours – as a lawyer, as a hearing officer, as a mother, and as a woman of great personal courage. And as much as you felt she helped you, I know she was grateful for all of the help you gave her over the years.

      You know, I still remember hearing you speak for the first time years ago at a workshop for lawyers that I snuck into with your encouragement. You introduced yourself, “My name is Barbara Ebenstein, but you may call me, ‘Goddess.”

      Attitude counts for a lot. You have it, and Dee had it. It was no surprise to me that you found each other and treasured each other.

  3. Marilee Shannon says:

    Oh Leslie I am so glad you remembered every detail and you are right-it was classic Dee. Probably why most school attorneys never wanted to sit across the table from her. We have lots of those stories!

  4. When I got a call from Dee’s son, Michael on Friday evening, I knew something was wrong. When he told me, I was stunned. My heart goes out to Michael who has now lost both his parents within a few short years.
    Like many people, I shared with Dee a deep, abiding concern about the treatment of children, especially kids with disabilities. I came to know Dee in 1993 when I was working at the Hofstra Law School clinic and had several special education cases on Long Island. I don’t recall why, but one day a woman called me up and said you guys should do thus and such because……… I was thinking, who is this woman? But she spoke like we were old friends and naturally we would work on whateveritwas together. And so, of course, we did.
    I quickly came to appreciate her skills and dedication, her fierce and unyielding advocacy. She was a warrior for children’s rights like no other. With Dee and Leslie, I got involved in the fight to oppose NYS Dept of Education’s proposal to use aversives in schools. It is a battle still not won; the need to protect children from restraints and seclusion continues to escalate.
    Dee was always sharing information, research, and suspicions – too often well founded. Smart as a whip, she could read between the lines of an audit like no one else, truly a skill I had not appreciated until she made me learn.
    Dee touched us all in many ways. When I ran for public office, Dee was there — supporting and connecting and pushing and prodding and typing and calling. My campaign staff and volunteers have all been saddened to hear of her sudden passing; they truly enjoyed working with Dee and learning from her. She taught us all – parents and teachers and lawyers and policy makers.
    I will miss her terribly. I still can’t seem to find the right words to express how I feel. As LesIie said, in a few days we will say good-bye to our friend, but it will not be good-bye because we will hold her in our hearts forever. It will be up to us to continue her legacy of love and advocacy and yes, muckraking.

  5. Marilee Shannon says:

    Leslie, so glad you have thought of this blog that gives us all a place to share our memories and express our sorrow about Dee. When you called me last night I had 8 friends over for dinner. I tried my best to get through the night without letting myself think too much about your news, but I could not wait for them to leave so I could reflect on our conversation. I immediately went to my email and was comforted by the posts from others who had heard the news. She has touched so many people and probably didn’t know how important she was to so many.

    I think I met her and you around the same time, 18 years ago. Remember the time we went to a workshop at Boces where the main speaker was a school district attorney? She was addressing the audience of mostly school folks about how they could win Impartial Hearings brought on by parents, when Dee stood up and challenged her. I remember that all eyes were on the 3 of us and the place was so quite; everyone was rivited on Dee. The school attorney was shaking in her high heels, especially when Dee identified herself and informed the audience of the inaccuracies in her presentation. I think that was the first time I realized that Dee could never be trusted
    to sit back, be quite, and accept what others were saying if she knew differently.

    She was not only one of the strongest women I knew, but one of the most passionate & intelligent as well. While she and I related to one another as parent advocates, what we had most in common was our love for our families. Almost every conversation or email started or ended with comments about my children or grandchildren, and hers always about Mike and Onna. My heart goes out to them and all her friends who admired and loved her. We will miss her. She was truly one in a million!

    • Leslie E. Packer, PhD says:

      Thanks, Marilee. You gave me a laugh reminding me of that workshop. For the benefit of others, I’ll tell a bit more about what happened as it was classic Dee:

      When the attorney/hearing officer started talking about a case that she (the hearing officer/attorney) was involved in, Dee knew that the attorney was talking about a case where Dee was the parent’s attorney. So she kept quiet, taking notes of what the attorney said about the complaint Dee had filed and how Dee had asked her to recuse herself and how she had an off-the-record conversation with the state review officer. And the school district defendant was there at the workshop, saying what a wonderful hearing officer she was, and if she couldn’t serve as an impartial hearing officer, who could? The hearing officer thanked her for her support. I wanted to tell them to get a room, but Dee signaled me to keep quiet and keep taking notes.

      I remember us all scribbling notes/exact quotes as quickly as we could, and when the attorney threw it open for questions, Dee stood up and politely asked, “And what else did the State Review Officer tell you during your off-the-record conversation, madam?”

      The attorney started getting visibly nervous and asked Dee if she was involved in the case.

      Dee answered, “I am the attorney for the parent who asked you to recuse herself. And I’m asking you again to recuse yourself.”

      The attorney was so flustered that the workshop ended within one minute. Everyone started milling around, not sure what to say or do. It was clear that not one school administrator there understood how very improper it was for the hearing officer and the defendant school district to have had ex-parte conversations about the case or for the hearing officer to have already discussed the complaint with the state review officer. We were appalled. They were non-plussed.

      By the close of business, Dee had received word that the hearing officer had recused herself.

      And I reported that incident to OSEP as part of their review of NYSED as an example of the corruption that goes on on a regular basis.

      They broke the mold when they made Dee.

  6. Jeanne Taylor says:

    What a huge loss. From her NY location, Dee helped my family and many others in Montgomery County, MD. We mourn her passing.


  7. Here is what I sent to my friends about Dee, a true hero….

    For those who have not heard the news, Dee Alpert passed away. She had a cerebral aneurysm that burst. I spoke to her a few times in the last month and she did sound more tired, and she was taking more naps. She was obviously concerned about the aneurysm. But she was herself in spirit, always fighting the school districts, wanting to launch investigations of bad actors, and pushing me to do the same–immediately! Dee was an advocate who wore Combat Boots and she fought fights that few others would take on. Her beliefs were strong and she was always faithful to them. We did not often agree, and she thought I was too moderate, and I felt her approach and tactics were often too strong for me. We’d debate on lists and in our own email and by phone. But we had become friends over the years. Just as I had friends on my right, I had a friend on my left (hard to imagine someone to my left!). And Dee was a very good, treasured friend.

    Dee was someone who supported the weakest among us. I think it was because she was so strong. She talked to parents late at night, and helped them when they had no other source of help. Dee was someone who talked with Congressional aides, something that few people knew that about her. She and Connie Garner, Senator Kennedy’s Chief Disability Aide, talked not infrequently during IDEA reauthorization. She also talked with senior folks in New York State. A lot of people valued her research very much. She knew the importance of the great middle, where policy is forged, and the importance of being active on the stronger side, so good public policy would be created and would not weaken. I don’t think many people understood this about her.

    But, what struck me about Dee in the last few weeks was the change in the tenor of our conversations. It had been about awhile since I had last spoken to Dee, and that conversation has been about restraint/seclusion advocacy–substance, activity and energy. When I called 3-4 weeks ago, Dee was quieter. I guess I talked to her about once a week or so in the last month. She talked about how life could end, and the anuerysm was an unknown. She didn’t want to linger. Just as with disability rights, she had researched aneurysms with great depth. She was talking to researchers and public health experts. She talked about advocacy about these issues, too. And, she began ending every phone call by telling me she loved me. At first, I thought it was an accident and then I realized it was intentional. Instead of getting off the phone to go do something or hop on the computer, she was taking a nap in the afternoon. She still talked about suing a lot of people and having Congress investigate the rest, but she was quieter. The quiet that used to characterize very late night calls now was in our afternoon calls.

    In some sense, I’m glad that our last call was in the morning, and almost entirely about advocacy. Pushing me to advocate harder. Debating public policy and our differing views on some issues. Dee was her old self–all 100% Combat Boots–really strong Combat Boots. And at the end, she told me that that she loved me. And that’s how I want to remember Dee.


  8. Sandy Alperstein says:

    Dee was an amazing researcher, a gifted writer, and a fierce advocate – she will be sorely missed by many, including me!

  9. Meredith Warshaw says:

    Thank you for sharing the sad news. I never had the pleasure of meeting Dee, although I spoke with her on the phone and emailed with her when I was moderator for COPAA’s email lists. Because I work at a med school, she would email me requests for journal articles she needed for her advocacy. In addition to her wonderful passion for kids with special needs, she also cared about her cyber-friends. She always asked about my gifted/special needs son and would offer help at every turn. This is a great loss for all of us.

    • Leslie E. Packer, PhD says:

      I think she’s the only SpEd advocate I ever knew who went to such great lengths to really keep current with medical research as part of her education advocacy efforts. She could have just asked us what we knew about…. but instead, she would read the original research herself and then would challenge schools as to their handling of a child’s symptoms or behavior by noting when professional research contradicted or refuted what a school was doing. And when talking with reporters or journalists, she kept telling them that they needed to go beyond the quick headline and speak with people who could educate them about what the research really shows about working with children with a variety of disabilities.

      Dee was in the background on so many important advocacy projects that have not yet been publicly exposed. I hope that the projects she was developing or engaged in can continue.

      • Meredith Warshaw says:

        I hope so too.

        Please post if there’s any place Dee’s son would like donations to be made in her honor. I’m sure there are many of us who would like to do that.

        • Leslie E. Packer, PhD says:

          I will, Meredith. Another one of her friends and I were talking about that this afternoon. Dee never told either of us any specific “please remember me by…” wishes, but maybe she told Mike. If not, we’ll all put our heads together to try to figure out something suitable.

          I think you can safely assume that Dee would not want any donations made in her honor to the State Education Department, the U.S. DoE, or any of the multitude of paid public servants who were supposed to do right by our children, students, and patients, but haven’t.

          Tomorrow I’ll upload a picture of Dee so that those who never met her in person can have an image of my favorite “pitbull.”

          • Meredith Warshaw says:

            Thank you so much! I couldn’t find any pictures of her online.

            If you are willing to contact me off-blog, I’d like to ask you something privately. Thx.