Articles, Newsletters, Podcasts, and Video

We Must Do Better!

By Eric Jorgensen / 2023-01-28
Posted in

Recently I subscribed to Peter Diamandispodcast and blog. I find his vision for an AI-powered future fascinating, and all too plausible. One of my favorite podcasts, The Jordan Harbinger Show, is already using ChatGPT to help listeners find episodes. I’ve read examples of papers written by ChatGPT on Facebook. It’s clear the future is now. 

As exciting as all this is, I’m concerned. I’m worried inclusive planning for those with disabilities will continue to be an afterthought. The nascent Metaverse is giving us the perfect opportunity to build a truly inclusive space from the ground up. Unfortunately, I’m not sure we’re up to the task.

From the outside looking in, it appears to me as if the tech space is dominated by able-bodied white men. I don’t see very much representation from the LGBTQ, BIPOC, or Disabled communities. Not surprising, given our country’s historic treatment of minorities in general. If this doesn’t change I fear the Metaverse will just be a digital version of our current situation. An inaccessible, stratified community.

A mantra you’ll often hear in the Disability Community is “nothing about us without us”. Yet how many of these tech giants have Advisory Board members with disabilities? What about the Venture Capital firms financing our new world? 

This year we have the 3rd oldest Congress since 1789, yet our country’s median age is ~ 39. How much do they understand about the new digital landscape? Is this who we want to rely on to ensure there are ethical guardrails in place? Something has to give, we can’t continue allowing corporations to make the rules. 

Look, I’m really excited about where the world is going. I think technology can make all of our lives better. But my excitement is tempered by the realization that many of the jobs best suited for my son are going to go away. It’s becoming much less expensive to automate, narrowing the job market for manual labor. Skilled labor and thought leadership is the career of the future. 

So what’s the solution? I think we need to institute some form of Universal Basic Income (UBI). As I outlined in my Waypoints article “Disabilities shouldn’t keep you in poverty“, our current social program of Supplemental Security Income (SSI) doesn’t work. Many families are required to have one parent be the caregiver because there are no other support options. And people with disabilities are struggling globally to find work. 

I propose a tiered approach. Incentivize businesses to hire those with disabilities. Rather than focusing on the disability and required accommodations, highlight the person’s skills and how they will fill the company’s needs. Encourage private companies in the Venture Capital and Tech spaces to bring on Advisors with disabilities. Work with organizations like Billion Strong and The Valuable 500.

For those significantly impacted by their disabilities, provide a UBI equal to the Federal Poverty Line (FPL). Change the rules for the Supplemental Nutrition Assistance Program (SNAP) by phasing the benefit out AFTER someone exceeds FPL. As long as someone qualifies for the UBI enroll them in Medicare. Get rid of Medicaid, SSI, and Temporary Assistance for Needy Families (TANF, “welfare”) and use the savings to fund UBI and Medicare. 

This will also require a change to our current tax code because I have no doubt it will be expensive. We need to increase what public corporations are paying. I would like to see a change to how investments are taxed, with higher rates for those receiving significant dividend payments. Make it the same as the income tax. Currently, the Capital Gains rate is 20% for an individual. This won’t affect most of you reading this, although I’m sure there would be no end of drama-filled ads lobbying against it.

Something needs to change. It doesn’t have to be (and probably shouldn’t be) as dramatic as I’ve outlined above. I want our children to have the same, if not more, opportunities as we do. I’m tired of fighting for inclusion. I don’t understand why it appears to be such a difficult concept to grasp. Let’s work together to make the future a world where race, religion, sexual orientation, and “ability” are immaterial. 

more

4 Ways to Improve Inclusion for Your Child in the Classroom

By Abby Burch / 2023-01-17
Posted in

Ashley Park-Brouse, Redhead in SPED

A new school year brings many feelings for children and families. Some are feelings are positive like excitement, relief, and hope. Some are less positive such as anxiety, fear, and dread. No matter which role …

The post 4 Ways to Improve Inclusion for Your Child in the Classroom first appeared on GT Independence.

more

We’ve Been Certified as a Great Place to Work — Again!

By Abby Burch / 2023-01-06
Posted in

We’ve Been Certified as a Great Place to Work — Again!

GT Independence was recently named a Great Place to Work for the 2nd year in a row. And we are so excited about it! 

What is a

The post We’ve Been Certified as a Great Place to Work — Again! first appeared on GT Independence.

more

Action Alert: Make Your Opinions on Autism Research Known!

By Alex Grandstaff / 2023-01-04
Posted in

Every year the federal government distributes funds for research on autism. The IACC makes recommendations about where those funds go and what research should

more

Technology, what can it do for you?

By Eric Jorgensen / 2023-01-04
Posted in

I’m not very involved in the education space, so if I’m way off base please correct me. I don’t believe public schools, as a whole, are doing very much to embrace the rise in new technologies. From what I’ve seen they seem to be stuck, using the same methods to educate children that were used back in the 1960s & 70s. There are some using tools like Robokind, but by and large, I believe most special education classrooms are still trying to teach our children how to tell time on an analog clock and count money.

I would argue skills like these have very little bearing in today’s digital age. I would much rather have teachers help students learn how to make the most use of smartphones. It doesn’t have to cost families thousands of dollars to get a phone, getting one used is often very affordable. Additionally, the Lifeline Support program can help by reducing your monthly bill.

I hope most, if not every, school district has wi-fi in their schools. I acknowledge public wi-fi has security challenges, but it should be good enough to help students learn how to use basic apps for public transportation, navigation, etc. There are companies like AbleLink and Life Sherpa that are going even further to help those with disabilities live independently, but I don’t know how many Special Education teams know about them.

What if we made an IEP goal to be able to successfully use technology to accomplish a life skill instead of being able to tell time on an analog clock or give correct change? I don’t see any relevance in telling time. And making change, well, I would rather make sure someone knows how to operate a point-of-sale device because this will tell you how much change to give. And a job coach can be assigned to help if there is a need.

I feel we should be teaching our children skills that are relevant to the world that is coming, not the world that we grew up in. Admittedly this is tough, especially for those who have been teaching for a decade or more. Change is hard, and most people don’t like it. It can be tough for us as parents to go against popular opinion when it comes to screen time.

I have trouble imagining how technology can help my son improve his independent living skills, but I believe it’s possible. I’m working on shifting my point of view from “it’s impossible” to “what supports does he really need, and how can those be provided virtually”. Here’s one example, preparing meals.

More and more appliances are being connected to the Internet of Things (IoT). What if my son has a virtual assistant, living anywhere in the world (which keeps the cost of labor down)? He and his assistant work out a meal plan for the week. They enter a list of what’s needed into an iPad linked to the refrigerator. The refrigerator recognizes what materials are missing and places an order through a meal delivery service. The meal delivery service debits his ABLE or Rep Payee account.

When the food is delivered the Virtual Assistant prompts him to put the groceries away. When the meal is prepared on a stove also linked to the iPad the Virtual Assistant monitors the temperature and other stove settings. There are sensors in the kitchen that will notify the Virtual Assistant if my son leaves the stove unattended. The Virtual Assistant can prompt my son to go back to the stove, and if this fails, can remotely turn the stove off – keeping my son safe.

Obviously, there are many places this could fail and there may need to be an intervention by a “real” person. It doesn’t meet my son’s current needs, but I believe it’s something he could achieve over time with the right support. And I think the same is true for many of our children, even those who don’t use words to communicate or use a wheelchair. The trick is finding the technologies that work for them.

Look here’s the harsh reality many of us face. Our children are going to outlive our ability to take care of them. And we deserve to have a life outside of being caregivers. Be careful not to let your child’s disability, and what you’ve put in place to assist them, become your identity. Be open to new ideas, be willing to try new things, and accept that sometimes they aren’t going to work as advertised. You may even have to adapt the tool to meet your child’s needs. Be ready to think outside the box.

I would love to have a discussion about technologies people are already using and what you think may be possible in the next 1 – 3 years. The more “outlandish” the better. Progress doesn’t happen by following the status quo. Reach out, send your experiences and ideas to eric@specialneedsnavigator.us or comment on this post. Let’s make independence for our children a reality!

more

Abuse – the quiet frontier

By Eric Jorgensen / 2022-12-14
Posted in

Next week (week of 19 December) I’m releasing the first of a 3-part series on abuse. Maybe I’m foolish for releasing it during the holiday season, but it seems very fitting to me. You see, growing up holidays were some of the worst times of the year for me. My mother was bipolar, and she would get more and more stressed out as the holiday got closer. Especially the “big 3” – Thanksgiving, Christmas, and New Year. This led to more emotional and physical abuse, I imagine because she was trying to make herself feel better.

I don’t think my family was unique, I believe many families become more stressed out during this time of year. Most will not end up treating their children the way my brother and I were treated, but that doesn’t mean it’s not going to happen at all. It’s all too common for abuse to go years without being reported. And then there’s the risk the victim won’t be believed, or the circumstances will be downplayed.

A step in the right direction is understanding what abuse looks like. It’s not necessarily repeated trips to the emergency room and black eyes. It could be your child acting out or becoming withdrawn. It could also be an unwillingness to go near someone or flinching when someone tries to hug them (if they’ve never had a problem w/ physical contact before). To this day I have a strong aversion to being hugged.

Children, and adults, need a safe space where they feel like they can be heard. My biggest takeaway from the mini-series is just how much more I have to learn. It’s a hard thing to face, the idea that someone could be abusing your child. Especially for those of us whose children have disabilities or complex medical conditions. Do they understand what’s happening? Can they protect themselves?

I invite you to listen to all three episodes and let me know what you think. What questions should I have asked that I didn’t? Are there additional topics I should’ve included? What did you like? Were there any parts that got you to say “huh, I’d never thought about that”?

The season is leading off with Marvie Corbett, a Licensed Clinical Social Worker in the state of Maryland. She explains what flags we can look for and how to approach our children if we suspect there is something going on. I love her framework of “we don’t keep secrets, we have surprises. And surprises have an end date” because I think many abusers stress the importance of keeping the “relationship” secret.

Episode 2 dives into the world of Augmentative and Alternative Communication (AAC). There was a study in 1994 that found AAC users were 2 – 6x more likely to suffer abuse. This is an area I knew nothing about, so I reached out to Hali Strickler, with TechOWL. I discovered her on the LOMAH podcast. I had never considered how much an AAC user relies on others to communicate. In some cases, they literally have no control over what they are allowed to say because if the words aren’t programmed into their device they can’t use them.

We end the mini-series with Amy Saltzman, founder of Spot-a-Spider and abuse “sur-thrivor”. I learned about Spot-A-Spider from Parenting Impossible – The Special Needs Survival Podcast. We talk about the importance of teaching our children the correct anatomical terms for body parts and how to spot red flags. Her website has a bunch of downloadable resources, and she offers video courses on how to spot a “sneaky spider” and an “obvious spider”.

A recurring theme was how we, as parents, need to trust our guts. If we feel like something is off we shouldn’t be too quick to accept a brush-off. In a perfect world, these wouldn’t be discussions I need to share, but that’s not the world we live in. I believe bringing these topics into the open will help take away the power abusers have. Each of these episodes gets “heavy” at times. I understand if you don’t want to listen during the holidays. The beauty of it being a podcast is you can listen whenever you want, as often as you want.

This miniseries opened my eyes. I feel I have a lot more to learn and share about topics outside of “disability planning”. In 2023 I will be starting a new podcast with Jennifer Fraser, author of “The Bullied Brain: Heal Your Scars and Restore Your Health”. The show will be about shifting paradigms around bullying. It’s a lot more common than I had originally thought and can show up in some surprising ways. It’s also damaging to the bully, not just the victim. We’re still in the planning stages, so if you have guest ideas or a topic you’d like us to cover please send it to eric@specialneedsnavigator.us.

Permalink

more

Employ our children

By Eric Jorgensen / 2022-12-02
Posted in

What a year it’s been. For the better part of it, my attention has been pulled away from my business to focus on my son’s well-being. I’m guessing many of you can relate. As I’ve heard it said, life is full of seasons. Fingers crossed 2023 brings staff and a therapist my son is willing to talk to. We’ll see. 

I feel for him. I think there is something to be said about the structure school and work generally provide. Often you’ll know what’s expected of you and when. You don’t have to spend too much energy or thought on when you have to be there. In some ways, I think the routine can even become comfortable and welcome.

Not to mention all the positive mental health benefits of meaningful work. There’s satisfaction in knowing you’ve made a difference, that you had an impact. You don’t have to be a tech giant CEO to do this. It could just as easily be accomplished by giving someone something to smile about or finding that pesky error in a line of code. 

Yet many people with disabilities are struggling to find work. The under/unemployment numbers are staggering. Unless something drastic changes it’s only going to get worse. Automation will eliminate more manual labor jobs, increasing competition for whatever’s left. We have to get out of the mindset that those with disabilities are limited to food, filth, or flowers. I get it, these are often the easiest to fill. But do they offer career paths? Are they what individuals with disabilities want to do? 

I want to give credit to nonprofits and State Vocational Rehabilitation agencies. They’ve been doing the best they can for years. Hospitality, landscaping, and fast food seem to always be on the lookout for labor. It makes sense that agencies would partner with these industries. I’m not faulting them for doing so, but I would like to challenge them to shift the paradigm.

Parents, we need to help them. Some of us have robust networks, let’s make introductions to different industries. Ask your children what they want to do, and don’t immediately discount their answers if they seem too far-fetched. Try to find jobs in the same industry. For example, if they want to be a Broadway actor but don’t have the necessary skills/talents could they work at a local theater as a stagehand? Be creative, and most importantly, collaborate with them.

The good news is it’s not all on us. There are more and more companies whose mission is to help employers hire individuals with disabilities. A few that I’m aware of are Zavikon (podcast guest, S1 E62), Auticon, and Daivergent. You should also be aware of the work The Valuable 500 is doing. They are a collective of 500 CEOs and their companies, “innovating together for disability inclusion”. 

All of this gives me hope. I recognize it takes time to make a significant change. I feel like things are going in the right direction, and I hope you do too. I believe my son will find work he enjoys in my lifetime. My wish is for him to earn enough to support himself, without Social Security. But it will be enough to know he’s found his place.

Permalink

more

Action Alert: Meet with your Federal Legislators to #StoptheShock

By Noor Pervez / 2022-11-08
Posted in

Congress’ failure to end the use of electric shock torture at the Judge Rotenberg Center earlier this year does not mark the end of

more

How SMA Has Affected My Perspective on Aging

By Kevin Schaefer / 2022-11-01
Posted in

“Your 60s you’ll have a major surgery, the music is still loud but it doesn’t matter because you can’t hear it anyway. Seventies, you and

more

Why is it so hard to get mental health supports?

By Eric Jorgensen / 2022-10-19
Posted in

Last week I went to a Special Needs planning conference. I had my doubts about going, something felt “off”. I had made the Air BnB, car, and plane reservations months ago; not to mention the price of the conference itself. So I went. After all, it would be a short trip. Fly down on Tuesday evening and back on Friday evening. The feeling of uneasiness never left.

Then it happened. I had woken up around 2 and couldn’t go back to sleep. I got a text from my son around 4 am on Friday morning. The first text was a picture of my kitchen, it was trashed. What looked like broken glass and water all over the floor. The next text was him cussing me out and saying he was leaving. There were a few more texts back and forth, but nothing constructive.

I didn’t know what happened and I had no way of finding out any time soon. I called my fiance’ and asked her to go to the house, but she lives an hour away so I was going to have to wait. I thought about calling the police, but given the apparent mental state of my son I thought it would lead to an even worse outcome, so I chose not to. Then I packed the rental car and drove to the airport.

I was lucky, I was able to catch the first flight back to Maryland around 7 am. By the time I got to the airport, my fiance’ had been to my house, but my son turned her away. He wouldn’t let her into the house. She told me he appeared to be okay physically, and she didn’t feel comfortable forcing her way into the house. I don’t blame her, my son is ~ 5’11’‘ and ~ 180 pounds.

I didn’t get home until after 11 am, 7 hours from the first text. My heart rate and blood pressure had returned somewhat to normal because I had done everything that was in my power. It helped that my fiance’ was eventually able to go into the house to survey the damage when my son left to go to the park.

My son is fine, physically. As far as I can tell, because he won’t talk to me, this was an outburst of anger. Based on what I found, it looks like maybe he dropped a glass and got flustered. It wasn’t water on the floor – it was the hand soap from his bathroom. It looked like he was trying to use it to clean the floor, but only making things worse. I found 4 or 5 broken glasses, and a lot more than that are missing. I’m guessing he threw them in the trash.

For those of you that don’t know, my son is on the Autism Spectrum. He also has an intellectual disability. I’ve left him home alone in the past with no issues. He’s very capable of making his own meals, doing his laundry, etc. But in the past couple of years, he’s been struggling with anger.

We’ve tried music therapy, but they couldn’t keep a therapist on staff. It felt like he would start over every couple of weeks, so we stopped going. Then I tried to find a “traditional” therapist. Many I came across wouldn’t accept him because he’s on Medicaid, even though I was willing to do private pay. At the same time, I was trying to find him staff, funded by his Medicaid Waiver. I struck out there too.

This is the perfect storm that led to last week’s events. I feel I probably should have known better and not gone to the conference. Hindsight is 20/20 and all. Recently he saw a psychiatrist who prescribed some medications but didn’t even try to offer therapy. She acknowledged he needed it, so that’s something I guess.

The one therapist I was able to find who was willing to work with him ended up turning us away because he didn’t want to participate. I’m struggling with this. I understand people should have agency, but as a parent, it’s really hard to sit by and watch your child use their agency to continue a status quo that is making them miserable.

So here we are. I got him to take his medication last night, but I don’t know if I will be able to on an ongoing basis. I flinch inside every time I see a text from him. When I was in the Navy I was regularly deployed, yet it’s living with my son that makes me uncomfortable. I think we may have staff by the end of November, but I’m not going to hold my breath.

Even when staff begins, it’s going to take them a while to earn his trust. He’s had a lot of Trauma in his life. His mom died when he was 12, his only friend physically assaulted him, and his dad had cancer. That’s a lot for a person without developmental or intellectual disabilities to process, I can’t begin to imagine what it’s been like for him.

I’m writing all this because I think it’s important to show that no one knows what anyone else is living with. I’ve made it my life’s work to help families with disabilities, yet sometimes it feels like I can’t do anything for myself. I know that’s not true, things take time. Our country’s mental health supports are damn near nonexistent.

I count myself lucky to have the network and support I have. Sometimes being the parent of a child with disabilities feels like living in a pressure cooker. It’s important to make sure we have a release. I think some of this pressure is what leads to the incredibly high divorce rates among our families. I’m certain it leads to worse long-term health outcomes for everyone involved.

So what do we do? What can we do? First, as I said, everyone needs a release. My dog has been mine. He and I spend at least an hour and a half every day walking. Respite is another key component. Let someone else take the watch for a few hours.

While you’re away focus on yourself, and if it’s applicable, your partner. As long as whoever is providing the respite is trained (and they should be or why are they there) you can let your guard down for a little while. Organizations like Nancy’s House and a Mother’s Rest may be a resource, even if only through their online communities.

Whatever you are going through know you are not alone. No one can truly understand your struggles, but those of us making our own way can relate to some of the pain you’re likely feeling. Books have always been a great resource for me. If you like to read or listen to audiobooks, may I suggest picking up a copy of “Peaks and Valleys”? I found it shortly after my wife died 10 years ago, and the lessons I gleaned from it serve me today.

You’ve got this. If I can be of service please don’t hesitate to reach out, eric@specialneedsnavigator.us. I certainly don’t have all the answers, but I can at least point you in right direction.

more