There is nothing I appreciate more than a woman on a mission. And when that mission is for the betterment of those in need, I like that mission even more. My friend’s Christine Lai and Ulrika Drinkall are the parents of children with special needs. When their sons were diagnosed they wasted no time feeling sad or helpless. These mamas put on their armor and prepared for battle. Both women have battled their way through any and all systems that were supposed to support their children, but fell short of their duties. Whether it is a person with autism, down syndrome, or any other disability, these women are in the business of lending their voices to the disabled community that is all too often unable to speak up for themselves. Their most recent joint venture, The Special Education Legal Fund, allocates grants to those with disabilities and their families. The grants are used to secure legal help when they are forced to fight for their education needs. These women know that all people with disabilities deserve the same access to education that any other person in our country receives. Their work has inspired me to open my mind, lend my voice, and offer support to all people living with disabilities.
Interview with Christine Lai, co-founder of S.E.L.F
What is SELF?
SELF stands for Special Education Legal Fund. Our mission is to provide financial assistance for legal support, in the form of grants, to economically disadvantaged families who need an attorney to protect their child’s special education rights.
Why did you start it?
My partner, Ulrika Drinkall, and I started Special Education Legal Fund because we knew there were families falling through the cracks in the special education system in Connecticut. On November 5th, it will be nine years since my oldest son walked into our district elementary school. We faced delay and denial from the moment we entered the school. As we fought for our son’s rights – a process that took almost two years – I thought to myself how difficult it would be for someone who was not as naturally inclined to be pushy with a government agency to advocate for their child. How difficult would it be for someone who was working two jobs, or who was a single parent, or who didn’t speak the language? The language of special education is particularly confusing and it is almost a full time job just to understand the procedures, deadlines, and guidelines that govern it all. This is not even mentioning having to keep tabs on what is happening in school with your child.
I used to show up at school unannounced all the time only to find that the bully who had targeted my son and was supposed to be separated from him was sitting next to him at lunch, or at an assembly, or in class. Or I would find out that he had not had the services that were listed in his IEP (Individualized Education Plan) like speech, occupational therapy, physical therapy, or social group. I had a mother tell me once that she visited school only to discover that her son’s therapy with the school psychologist was being met by the school psychologist reading a book to the entire class for 20 minute each day. Because the psychologist had 2 children with special needs in that class, she used the read aloud period – which is not what was intended for either child – to take credit for serving two children that day. But not every parent can show up at school every day.
Who are you trying to help?
For any parent, advocating for a child in special education can be an overwhelming experience. When a child receives a referral for special education, it is often a confusing and emotional time. The child may be underperforming academically; there may be behavioral problems; there are often social issues. Under pressure and confused, parents who lack information and resources may agree to a program that is not right for their child or does not meet their needs. Special Education Legal Fund was created to provide parents in need with the financial support necessary to secure legal assistance in special education for their child or children.
The families we have seen so far in this process are diverse in terms of where they live and also their experience. Some of them saw their children’s rights and their own concerns ignored by the school districts in which they live for years – some as many as ten years. At that point, the damage that has been done to the child and the family by the school’s refusal to abide by the law is almost irreversible. Some families have seen their children face expulsion because of a misidentified or poorly identified disability. We have also seen families who can’t advocate effectively for their children because of a language barrier, or because they work two jobs, or because they’ve left their husband who abused them, or because their immigration status is questionable. What the families that we’ve met share is their tears and their heartbreak. The ones that have seen the system fail their kids for ten years or more are almost broken by the process.
Why do parents of children with disabilities need people helping them to be advocates?
The Individuals with Disabilities Education Act provides that all children with disabilities receive a “free and appropriate public education.” Before IDEA, public schools could – and did – simply refuse to educate children with disabilities. However, because the law was never fully funded by the federal government, much of the rising costs of educating a rising population of children with disabilities falls squarely on school districts. In any system where there are limited resources for a growing population, there can be dispute over those resources. The lack of funding can create conflict between parents and schools. This can sometimes only be resolved through the legal system.
Sometimes families need help advocating for their children because of the knowledge gap, a language barrier, or a cultural one. However, we have seen families with incredibly informed parents face districts who refuse to abide by what is in the child’s IEP (Individualized Education Plan, the legal document that provides for a child’s special education plan). If the parent can’t afford an attorney, they have no recourse at all to force the district to comply with their legal responsibilities. In all those cases, the child suffers, and we as a society pay for it in the end. Children who go undiagnosed or are not served properly often develop behavioral problems due to lack of success in school. Inside and outside of the school system, this can become a larger problem for a community.
What services do you offer?
Special Education Legal Fund provides grants of up to $5000 to qualified families with children in the special education system who may need help securing their child’s rights to a free and appropriate public education. We pay those funds directly to a special education attorney, chosen and retained by the family, that meets our professional standards for practice.
But what this really means is a lifeline for a family that has nowhere to turn. Families below the minimum poverty line in Connecticut can sometimes qualify for legal aid, or free advocacy services. However, the special education community in Connecticut is a small one. The lawyers that matter, the ones that are effective and are known to the school districts, are few in number and are expensive. Even a family that is above the poverty line usually can’t afford one of these attorneys. Most of these lawyers, even though they can be expensive, did not get into this field to get rich. But they do need to make a living, and many of them are sole practitioners, so the number of probono cases they take is limited. If this organization can enable an attorney to take a case that he or she otherwise would have turned down, then we feel like we have done our job.
How can people find you?
Families are able to find us on the web here. Also, through our partnership with various organizations all over the state like the Boys and Girls Club in Stamford and Waterbury, STAR Inc in Norwalk, Connecticut Institute for Refugees and Immigrants, Danbury Youth Services, SPEDnet, Abilis, Connecticut Parent Advocacy Center, and PATH/Parent to Parent – all of which are organizations which serve vulnerable families in our state – we have been introduced to families and children in Bridgeport, Hartford, New Haven, Norwalk, and Stamford who need our support and services. We are also fortunate to have the support of a number of independent schools supporting children with special education needs in the state, such as Winston Preparatory School, Eagle Hill School, and Fusion Academy. Finally, we could not fulfill our mission without the support and understanding of the special education attorneys who practice throughout our area.
Could you share a little if your son’s story?
My son is 14 now and he is a bright, intelligent, and sensitive young man with an incredibly positive attitude about life and his experience. He would not be where he is today without the team of lawyers, evaluators, teachers, and therapists whose collective efforts allowed him to receive the education that was and is appropriate for him. He would not be where he is today were his parents not inclined to fight and push and advocate with whatever was necessary to get him what he needed and what he was entitled to. And he wouldn’t be where he is without the lawyer that still sits with me, to this day, in every school meeting I have with his district school.
If you are interested in supporting S.E.L.F and learning more about what they do you can donate here. Also please stop by the Manfredi store on Greenwich Avenue on November 15th. A portion of all sales that day and evening will support. S.E.L.F.
L – how close to home does this hit me?!!! Wow – after the state tested my son Tucker last year they told me he was not dyslexic and did not qualify to get get accommodations. Tucker has been at Windward for the last 6 years. windward a school that only takes dyslexic kids and is very particular about who is the right kind of wrong to go to their school. In this meeting I lost my “crackers” on them as you can imagine but in the back of my head although I was furious with their lack of depth in the testing Tucker their conclusion , I know that we could afford to get him privately tested. I though about the families that have nothing but the States archaic educational system to rely on and can not afford private testing. Thank you for shinning a light on SELF. what important work they are doing!!!
Thanks Toby! Thank you for sharing your story! It is, unfortunately, not an uncommon one and the families that I meet do not have the resources to opt out of the system with private evaluations for their kids. This leads to many lost years for some kids who slip through the cracks and you never get those years back. Thank goodness you were able to get the help for your son that he needs! Keep on fighting the good fight! xo Christine