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Only one way to conclude this first season of Young Gifted Black & Disabled. The original YGBD brothers; Co-producer, AJ Murray D’arcee Charington Neal are back! Our O.G’s join me to take the mask off masculinity and see what’s behind it race, sexuality, gender norms, the patriarchy and of course disability. We considered releasing this […]more
This will be the last time I write an article for this blog, going forward I will be posting on Substack. I’m creating a paid newsletter, Waypoints, and shifting my frequency down to monthly. Although I’ve enjoyed writing every week, I want to do a deeper dive into planning topics. Specifically, I want to do a better job exploring Social Security (SSI, SSDI), Medicaid, and future planning for those with intellectual and developmental disabilities (IDD).
In addition to the newsletter, it’s my plan to offer monthly live Q & A sessions as well as discount codes to my IDD High School Transition Roadmaps for paid subscribers. I intend to release companion videos for every state and DC. These will be short, ideally < 5 minutes each. The goal is creating a “how to” for the various forms one needs to fill out when applying for services.
It’s a work in progress, right now the only posts I have is a “coming soon” announcement and my bio. As so frequently seems to happen, I underestimated how much work would be required and didn’t give myself the time necessary to have it 100% ready by the new year. Now I’m aiming for the 3rd week of January. I don’t think I’m going to start charging until March, so if you sign up early you’ll get at least (1) year free.
Thank you for the support over the years. I hope I’ll see you there.more
The following may represent a very unpopular opinion. I’m going to preface what I’m about to say with I’m a dad, my son is on the Autism Spectrum and he has an intellectual disability. I don’t let his disability define him. Yes, I am his legal guardian, however for the most part he makes his own decisions and chooses his own path (including his Self-Directed staff).
He does not now, nor has he ever, have a “superpower”. He is not a savant. He doesn’t have “extraordinary” talents. In many things he does, he’s average – just like most of us. I believe we, being human, fall on a bell curve. That means there are going to be those who fall below and above the median, but the majority are going to be in the middle somewhere. That’s right, we’re “average”.
Why is this a bad thing? Why does everyone need to be an outlier? It’s not the outliers who keep the trains running on time. To me, people like Elon Musk are outliers. He’s shifted the paradigm in quite a few areas, but I wouldn’t want a planet full of people like him.
Having disabilities shouldn’t be something we are afraid to acknowledge. I don’t understand what it is about Autism that encourages some people to skirt around the disability topic. No, we shouldn’t focus on deficiencies. But it’s the challenges people have that are going to get them the supports they need. In my opinion, it’s very important to teach our children to be self-advocates.
To me, this does not mean telling them they are “special”. Absolutely highlight their strengths, make sure they know what they are good at. But it’s just as important to make sure they know where they need help and make it okay for them to ask for assistance.
There will be those who fall within the “gifted” range of the bell curve. I still don’t think it’s a “superpower”. They have talents and abilities that may help them be more successful. It’s up to us, as parents and community members, to help them realize their potential. This is what we should be doing for everyone – whether they have a disability or not.
So please stop asking me what my son’s “superpower” is. Don’t assume he’s a savant, he’s not. He’s a young man who is trying to find his way in the world and deserves the same opportunities as anyone else. Rather than focusing on disability, color, race, religious affiliation, sexual orientation, etc; let’s have a conversation about how we can help our fellow HUMAN BEINGS be their best selves.
Frequently I find myself apologizing to my clients for correcting them. I worry that maybe I’m being too literal. I acknowledge agencies and organizations should ask clarifying questions to ensure everyone is on the same page, but all too often this doesn’t happen. And as a result, services and supports may not be granted, or in some cases, may even be removed.
Some of the most common mistakes are with language around Special Needs Trusts, Social Security, and Medicaid. As a parent who has gone through trying to get services for his son, I will tell you the terms used can make your head spin. There is so much to keep track of. Add to this the day-to-day “stuff” and it’s a wonder anyone gets it right on their first try.
Social Security could refer to (3) different programs, it’s important to be very clear about what you are talking about. As I understand it, the Social Security Administration’s (SSA) workers may not be cross-trained. This means you want to make sure you are very clear about which program you need help with to increase the odds you are directed to the right person.
Supplemental Security Income, or SSI, is not “Social Security”. It is also not Medicaid, although in many states if you qualify for SSI you will automatically get Medicaid. They are separate programs. SSI is for the elderly and disabled who make very little, or no, income. You cannot have more than $2,000 in your name ($3,000 if you’re married). It will be reduced by $1 for every $2 you earn. This is a very broad overview, I encourage you to check out my YouTube videos if you’d like a deeper dive.
Social Security Disability Insurance, SSDI, is an insurance benefit workers need to earn credits to qualify for. The benefit received will be based on the worker’s income history. It is possible for children with disabilities to receive this if they qualify for the Disabled Adult Child Benefit (also called the Child Disability Benefit). In some cases, like my son’s, you can receive both SSI and SSDI. The SSI will be reduced by $1 for every $1 of SSDI you get.
Social Security retirement is what most people recognize as “Social Security”. Like SSDI, workers need to earn credits to qualify for this benefit. The amount they receive will be based on their average income over 35 years. This is why it’s important for those self-employed to be aware of how much income they report. It’s not always the best idea to minimize your reported wages, especially if you have a disabled child.
Medicaid is health insurance for the poor, elderly, and disabled. It is the payor of last resort, meaning it won’t pay medical bills until all other insurance has. This is good to keep in mind when writing divorce agreements, because if worded improperly you may not be able to have Medicaid pay your child’s bills. Medicaid also pays for State Waivers. In some cases, you may not “need” the Medicaid health insurance, but will be using the Waiver to pay for staff allowing you to work and/or live independently.
When talking about Special Needs Trusts there are (2) types, and the requirements for each are very different. A 1st Party, also known as a “self-settled” or d(4)a Trust, is funded using the assets of the individual with a disability. They must be opened before age 65 and will have a Medicaid payback provision. 3rd Party, or “supplemental needs” Trusts, are funded using assets not belonging to the individual. There is no requirement for Medicaid payback.
When asked if a person with disabilities has assets, neither a 1st nor 3rd party trust should be considered. These trusts, by design, do not allow the individual with the disability to have any control. The trustee decides when and how the money will be distributed from the trust.
This is just the tip of the iceberg when it comes to how the words we use matter. I’m not saying it’s “right” that we, the parents, are expected to know all this. But it’s the world we live in. Every profession has its jargon, and the longer someone works in their field the more likely it is they will take for granted everyone knows what they mean. I’ve created a glossary of the most common words I get questions about, it’s a living document. I will continue to add to it as I work with families. You can get your free copy here.more
Having a son on the Spectrum you’d think I would be over the moon with excitement given how much press Autism has been getting lately. I’m not, and candidly I feel this is something more of us should have on our radars. Concentrating too heavily on one diagnosis, much less on the more “capable” end of the spectrum, leaves a LOT of families out to dry.
I have seen a very active presence on social media and in the news from Autistic self-advocates. I applaud them, I believe increased awareness is necessary. But I would like to see it in a different framework. One which highlights Autism as a Developmental Disorder (which it is according to the CDC). More and more funding is going towards Autism research and treatment, and more and more people are seeking out a diagnosis. Is there any correlation? I have personally heard parents say they wanted an Autism diagnosis so their child would qualify for therapies. Could this be part of the increase in diagnoses across the country? I would like to see scholarly research on this.
What bothers me is many of these therapies, like ABA, could be useful with other Developmental Disabilities. I apply the same reasoning to employment. It’s fantastic there are so many programs popping up to help individuals on the Spectrum find work and train employers. But this isn’t what I consider “neurodiversity”, because it’s leaving out so many others. Acceptance needs to be global, it shouldn’t apply to a specific diagnosis.
Teaching an employer to allow more frequent breaks or offering a quieter environment would benefit everyone – with or without a disability. I worry about families and individuals with Down Syndrome, Cerebral Palsy, genetic deletions, etc. Are we leaving them out in the cold? Several states have waivers focusing just on Autism. I think I understand the “why”, I believe it’s tied to the diagnosis prevalence. This takes me back to are we looking for a diagnosis to have therapies paid for?
I hope this doesn’t sound like the disability equivalent of “all lives matter” which misses the point of why there is a Black Lives Matter movement. I truly believe funding research into how therapies that benefit those on the Spectrum impact other Developmental Disabilities will show efficacy across the board in many cases. This means our funding dollars can go farther and help more families.
I think it would also help create a more inclusive environment. I don’t think there is an “us vs. them” mentality, yet. But I could see it evolving into this if we’re not careful. Guardianship and institutions have their place. No, neither is a solution that should be applied to everyone. But we shouldn’t take it off the table. I feel the same is true for ABA. I do not doubt there have been abuses and negative results. But as I understand it, ABA has evolved.
Rather than beat the “nobody should do this drum”, let’s help people make more informed choices. Lead with facts and evidence-based research, instead of emotions and personal anecdotes. Your experience has a place, especially if you’ve encountered professionals who do poor work. I’m not saying to gloss over it. But don’t latch onto clickbait or social media, this is designed to capture attention.
I would like us all to take a step back for a moment. Let’s look at the landscape in front of us. Inclusion shouldn’t be defined as accepting a single diagnosis. It’s easy to focus on what’s right in front of you. As groups get funding other organizations will start up with the same focus in the hopes of receiving funding as well. This shouldn’t be taken as me inferring they don’t do great work, many do. But it means other groups will often be underserved for lack of resources.more
Lateef McLeod (pronounced McCloud) is a writer, poet, performance artist and currently pursuing his PhD. He’s a user of AAC technology or Augmentative and Alternative Communication. This technology enables those who are nonverbal to communicate in a variety of ways. In today’s episode I get to speak with Lateef and discuss AAC,Synthetic Speech, his experience […]more
A few months ago, my brother came to my room to repeat what our mom had just instructed him to tell me. With a slightlymore