Personal Stories

Transitioning from SSI to Adult Child Disability Benefit

By Financial Planning, Government and Insurance Benefits, Personal Stories No Comments

In a prior blog, I wrote about securing SSI for my son Josh. A few years back my husband retired. While many people wait till 70 to collect their Social Security benefit, in an effort to maximize on their income, I encouraged my husband to take it at 65. The reason? I wanted our son Josh to transition from SSI to the SSDI Childhood Disability Benefit (CDB). With the Childhood Disability Benefit, Josh would receive 50% of my husband’s Social Security benefit. If my husband should pass, the Childhood Disability Benefit would increase to 75%.

In our case, CDB has some advantages over SSI:

1) Unlike SSI which deducts a dollar for every two dollars earned, the CDB does not.
2) This benefit is not needs-based, so the Adult Child can amass more than $2000 without losing their benefit.
3) After two years, the Adult Child is eligible for Medicare.

For a child with ASD, Social Security is part of your child’s financial safety net. In our case, 50% of my husband’s benefit was greater than SSI. In addition, as Josh was preparing to graduate from CSUF, the employment flexibility would prove useful in the future.

To Qualify For CDB

This benefit is available to adults with a disability that began before age 22. It requires the parent to have paid in amply to Social Security and to be either collecting Social Security or be deceased. For details see this pamphlet:

Transitioning from SSI to CDB

In making the transition to CDB, I first contacted our advisor, Jim Huyck to make sure I understood the process. When my husband was ready to apply for Social Security, I accompanied him to the Social Security office. The representative at Social Security noticed that our son was on SSI, and immediately filed the paperwork to transition him to the Child Disability Benefit.
The one hitch, was that Josh would no longer be receiving SSI and therefore he would no longer receive Medi-Cal funding through Social Security. I was told that we needed to go to the Social Services office to apply for Medi-Cal.

The application process for Medi-Cal through Social Services was simple. I had to bring Josh’s financial paperwork and proof of citizenship to the Social Services office. Social Services reviewed the material and approved Josh’s transition such that the funding of Medi-Cal would now be through Social Services. Josh was assigned a case number and a case worker. For details on the process, please refer to

Reporting Wages when Receiving CDB

Like SSI, it is important to report your wages when receiving CDB. Unlike SSI, the rules for how wages are treated are different. This is a bit confusing and to be honest, since Josh has not cycled through this process, I am not sure I fully understand it. Below is a summary:

  • CDB recipients, who are making less than “substantial gainful activity” (SGA), will continue to receive their disability benefits while working. In 2020 SGA is $1,260 per month
  • Once the recipient’s earnings are higher than $880 for nine months during a 60-month period, the Social Security Administration will review the recipient’s income record
  • If the average earnings during the trial work period hit or surpassed the substantial gainful activity threshold of $1,260 then the benefits will likely stop. But if the average earnings during the trial work period are below that amount, then benefits will continue.
  • If the recipient can work while continuing to receive benefits, they can enter what is known as an extended period of eligibility. After the trial work period, they have 36 months during which they can receive benefits for any month in which their earnings fall below the substantial gainful activity threshold.

This month, June marks the two-year anniversary since Josh went on CDB. I will write a separate blog on the process of enrolling Josh in Medicare.

Tanner Browning: Autism and Flexibility

By Conquering Emotions Workshop, Educational Success, Personal Stories No Comments

People With Autism Can Be Inflexible

Every parent wants their child who has been diagnosed with Autism Spectrum Disorder (ASD) to lead the best life possible. But life can be very unpredictable.  Through experience, a neurotypical person learns to be flexible, so that when they encounter an unexpected situation they can adapt without assistance. People who are “on the Spectrum” typically have difficulty in learning to be flexible and adapting to change. People with Autism can be very rigid and often don’t deal well with changes or when something unexpected happens.

For someone with ASD, unexpected can be as simple as leaving the house to go out for dinner, attending a social event, or even spending an extra hour shopping at the mall. People with ASD tend to plan out their rituals for specific times throughout the day. If those schedules are disrupted, they can react by becoming anxious, freaking out, or just refusing to do the activity that conflicts with their rituals. There are several issues why people “on the Spectrum” are rigid or unwilling to be flexible. In this blog, I plan to highlight some of those reasons and provide a story of how I am dealing with my own inflexibility.

Protection Through Comfort Zones   

The main reason that people “on the Spectrum” are not willing to change is because it disrupts their comfort zones. Comfort zones are places where a person is in control of their situation or places themselves so that they can feel safe and ease their stress. For someone with ASD, comfort zones typically include doing the same rituals and routines repeatedly. People with Autism use their comfort zones to avoid change or challenges that can make them feel uncomfortable. It’s kind of an invisible barrier that protects them from things that they might find threatening.

It is often hard enough for people who want to step out of their comfort zones to adapt to the difficulties they might encounter. People who have Autism can literally hold on to their comfort zones, because of their fears, to the point that they would do anything to keep their schedule as rigid as possible. This inability to change is called inertia. Inertia is a feeling of being paralyzed during stressful events.

Oftentimes when people with Autism must leave their comfort zone, they just shutdown. The result is that they then become isolated and more inflexible. This can be very frustrating for parents who must deal with their child’s lack of flexibility. As a result, it is very easy for parents to let their children remain in their comfort zones, thereby avoiding the consequences encountered when those comfort zones are disrupted.

How I Used Comfort Zones

Being Autistic myself, I have had a hard time making changes and being flexible about basically anything. To deal with life, I have developed my own comfort zones. When I was younger, my comfort zone was going to school and playing video games when I got home until I went to bed. My parents would often push me to clean my room, take a shower, or do my homework. When there was an event happening like going to church on Easter or cleaning up when a guest was coming, I would glare at my parents and resist complying with their requests. Often, I felt that my very rigid schedule or ritual was being threatened, triggering inertia or defiance. I would then ignore them so that I could complete a multiplayer game like Call of Duty or Halo. This made my parents very frustrated with me and angry that I was not addressing my chores. Sometimes, they would call me lazy, unmotivated and selfish because of my inflexibility, but really, it was just an intrusion on my comfort zone.

In high school, my parents often worried about how this inability to be flexible would impact my life after I graduated. During high school I played football and my dream was to play for the NFL. This focus on my fantasy caused my grades to suffer. I was barely passing with Cs and a few Bs. I graduated high school with only a 2.8 and almost flunked out of community college after one semester. Several years later, I am about to graduate from California State University of Fullerton (CSUF) with a 3.72 GPA in Public Health.

To be honest, it took me a while in college to figure out the best way to handle my study schedule. I often relied on my anxiety about grades to create the motivation I needed to get schoolwork done. I know that anxiety-based motivation isn’t the best way to enable change, but it seems to work for me.

Increasing Motivation with Rewards

One method I use to increase my motivation and willingness to change is to reward myself for participating in activities. In looking back, this can be considered both a good thing or a bad thing. The good thing is that rewarding yourself creates motivation to go to a place or deal with schedule changes. The bad thing is that when you reward a person for doing something, the person might become spoiled and expect a reward, believing, “Oh, I am always going to get my favorite food for going to church with them on Sundays or going to each social event.” For me personally, reward-based motivation can backfire about 65% of the time, because of this “spoiling” effect. The other problem is that it can take a long time to change a person’s behavior. This can be frustrating.

Here is an example of how I used rewards to change my attitude. I used to HATE going to the movies because it seemed like too much time. As a result of my disdain, I would often not talk to people before and after the movie along with not even watching the movie. What helped me to adapt is that I rewarded myself for doing things I did not want to do. For example, if I went to a movie and interacted with people, my reward would be that my parents would pay for the movie tickets and dinner. As a result, I started going to the movies, once a month, with a couple of people. I got used to going and learned to like going to the movies. I enjoyed talking to people and eating free dinners. In fact, I became excited about going to the movies and engaging with my friends, however, I still needed the free movie tickets and a free meal to motivate me, because I wouldn’t do this activity on my own. Yes, it took me about three months of going to the movies, but by slowly adding this new activity of going to the movies over time, I was able to adapt. In the end, I was enthusiastic about attending a blockbuster and going out with my friends. Eventually my parents stopped funding the movie and dinner, and while I did resent this, it did not stop me from going.  It had become more comfortable for me to go and enjoy myself.

I cannot guarantee that this method would work for everyone with Autism. I am sure there are many other ways to deal with flexibility and changing of schedules. In the end, Autism and lack of flexibility remains a big issue. In the past, I was one of the most inflexible people I know. However, I am working on increasing my flexibility and I hope that I can continue to become more flexible over time.

Vu Story: College

By Educational Success, Personal Stories, Uncategorized No Comments

A Look Back at College

What was it like in college for me? Back in high school, college meant I would have the freedom to do the things that I liked. Unlike others, my college experience was mundane. Although I wish I had joined clubs, I was happy with the way things were. I was happy because I got to do the things I wanted to do. Going out to party was out of my comfort zone. I spent most of my college years watching movies and shows and playing video games. It’s embarrassing to admit this but it’s best to be honest and transparent.

Adam and Me

One movie I could relate to was Adam. Adam is a story about a man named Adam with High Functioning Autism, Asperger’s. He lives in New York and struggles to live after his father’s death. He’s been laid off from his engineering job because he couldn’t socialize and connect with his boss and co-workers. He needs to find a job right away to pay the bills for his New York home or he gets kicked out. He meets this beautiful neighbor named Beth. Beth is a schoolteacher who has feelings for Adam. The two get together and go through the ups and downs of being girlfriend and boyfriend.

Adam is a movie where I find a lot of commonality with the main character. A lot of the things Adam does remind me of myself. When Adam trembles at the thought of going out to a party with Beth, I am reminded of how I’m always like that when it comes to socializing. He would pretend he’s not there so that Beth would leave.  When I’m invited to parties, I get very nervous exactly like Adam did. At times, I feel like my heart is going to pop out of my chest. What I love about the movie is that when I’m watching it, I feel like I’m watching myself through Adam. As someone who is on the spectrum, watching movies like Adam is a way for me to immerse myself in the fictional world.

Watching movies wasn’t my only hobby. I also liked watching TV shows. I recently saw a show called Atypical and I thought it was amazing. What makes this show so relatable is the main character. He’s on the spectrum like Adam and he struggles with social queues. When I watch shows like this, I can feel the realness and sensitive side to them. The depiction of High Functioning Autism is on point. His lack of eye contact, sensory processing issues, blurting out inappropriate things, not being able to read other feelings, social struggles, his obsession with one subject, his outbursts and all the way to his food preferences are all I can relate to. I love shows like that.

Socializing Through Video Games

For me socializing during college was playing a game called Clash of Clans. I remember exactly the moment I downloaded the game. I was bored one October night in 2012. I wanted to look for something to do to pass the time. Looking back, I should’ve done something more productive. But I don’t regret it. Playing Clash of Clans has given me a sense of community and belonging. I would chat to the people I’ve met through the game day after day. It’s like a second family to me. Some of us are still in that clan to this day.

Sure, my college experience would’ve been much better had I known to join clubs but that wasn’t my interest. I didn’t have any interests besides gaming and watching movies. My school didn’t have any of those clubs so I spent most of my days going to school and then driving home. I would have loved to join a gaming club or something that I would enjoy.

What I Learned as an Intern

What I’ve found being in an intern at the Orange County Asperger’s Support Group is that people who have the same mindset as you do are more likely to be more understanding. I can feel it and then feel more comfortable. I would imagine being in a gaming club could have the same effect. Seeing someone who likes video games is easier to talk to because we both can have something in common to talk about. I’m not the best with small talks but with video games, I can keep a conversation going. I can talk to gamers and feel comfortable. It makes it easier when you have something to talk about instead of blank thoughts. It’s very awkward to have silence in a conversation.

What will the future hold for me is still very hard to fathom. One thing for sure is that I’ll have to become more independent and less sensitive to the things around me. Life is very hard and the one that is willing to put in the work will make it out on top.

Judi’s Story Continues: Independent Study Resolution

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For those of you following my story about the REEL People program and my son Josh, I wanted to give you an update. When we last left our hero, we were trying to get CSUF to recognized the REEL People program as an independent study.

Because Josh is an adult, I had to relinquish control of navigating the red tape to Josh. To my surprise, Josh took the lead. He contacted several professors to try and find a sponsor. He was turned down. He sent emails to the Chairman of the school, who did not respond. After several weeks of rejection, Josh went by the Chairman’s office. The Chairman’s secretary told Josh he would have to send at least three emails.

Overcoming Rejection

With perseverance, a few weeks later, Josh finally spoke to the Chairman of the film school. They set up a meeting. Josh showed, up but the Chairman was speaking with someone else in his office. Josh left but asked the secretary, “To please let the Chairman know that I stopped by.”

Feeling bad, the Chairman then contacted Josh by phone to arranged for a call that evening. Josh asked me to write up a script, so that he would know exactly what to ask. That evening, Josh spoke to the Chairman on the phone. The Chairman was supportive of the idea, and asked Josh to send him some additional information by email.

The next morning, we worked on the email. Josh suggested mentioning me in the email, not as his mother, but as the President of the Orange County Asperger’s Support Group. I thought that was clever. I also felt good that he valued my role with OCASG.

Communication Stopped

Well Thanksgiving happened, and all communication stopped. A week later, I was kind of worried. I spoke to Josh on the phone, and he said that he planned on going by the Chairman’s office to follow up.

But coincidentally, the Chairman called him that day. Josh stopped by the Chairman’s office on his way to class. The Chairman’s secretary informed Josh that he would need additional information. Josh called me. I supplied the missing data. Working with the Secretary, Josh completed the paperwork.

Josh Plays a Trick on Me

Later that day, Josh called me up. “Mom,” he said. “I need one more piece of information. Would you please check online to see what courses I am signed up for the Spring semester?”

I logged into the CSUF website. I started reading off the courses, “Black Representation in Film,” I started. “Production 2,” I continued. “Independent Study, Josh you got in!” I exclaimed.

Josh laughed, “I know. I wanted to surprise you. The Chairman of the department, is going to be overseeing the independent study.”

Earlier that day, I got a text from my friend Diane. She informed that her son Josh was approved for the independent study by Art Department.

So, as it stands now, both Josh B. and Josh C. will be together once more this January, to take the REEL People course.

Happy and Proud

I am so happy and proud. Happy that Josh got accepted into the program. Proud that Josh made it happen. Being able to self-advocate is critical for our kids. I am pleased that Josh is demonstrating the ability to understand motivations, communicate, and persevere.

Of course, I am still keeping my fingers crossed that there are no unforeseen surprises.

Vu Story: Bullying

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When I was young, bullying existed. Now whenever I turn on the news, I hear about bullying. It’s such an unfortunate epidemic that doesn’t seem to go away. Throughout my middle and high school years, I was called names constantly. Because my head was bigger than most people, the bullies would call me big head, jimmy neutron and monster. Monster was my favorite, because at the time I I thought it was a compliment. Here’s the story of when I was first called monster.

The Monster Nickname

It was during PE and we were playing soccer. I’ve always loved to play soccer. Every time we got to play it, I would get really excited. My love for soccer stemmed from watching the 98 World Cup. It was love at first sight. I was playing well on that day. And out of nowhere, a guy called me monster and a couple of his friends snickered. I’d thought they meant monster as in I was a good player. I kept playing hard. I felt really good that someone would give me such as compliment.

Unfortunately, it didn’t stop there. That’s when I knew it wasn’t a compliment. It was really annoying and I hated when it was time for my PE class. I started wearing long sleeve shirts under my PE uniform in order to make myself look bigger. I felt uncomfortable, but I was happy in some way because it was a way for me to stop thinking about my thin body.

I Wasn’t Beat Up. I Was Just Called Names.

Middle school and high school years were not fun for me. There’s a good side to this story because I wasn’t beat up or anything. I was just called names. Maybe it was because I ignored what they were saying and went on my business. Perhaps the reason that I did not get beat up was that I had a friend in PE. I made an effort to always stay by his side, so I didn’t look like a loner.

Workplace Bullies

Bullies are everywhere and they exist in the workplace too. Unlike grade school bullying, workplace bullying is more subtle and can be quite destructive. I once read an article on Yahoo about bullying in the workplace and I found it to be very informative. There are ways to help mitigate the bullying in the workplace such as evaluate the situation, stand up for yourself, document the situation, get superiors involved, and move on. I can’t speak to how effective these steps are as I’ve never had a real job, but from watching my mom, I can say that they do work.

I always wondered what it would be like to work. I had an inkling of what it’s like working from watching my mom. A lot of how I view the world is through my parents. I can see a stark contrast in how they look. My dad, who works alone, doesn’t interact with a lot of people. He looks relatively young for his age. People guess his age wrong all the time. They are amazed at how young my dad looks. My mom, in comparison, is often very stressed at work so it shows in her face. After reading about the article and telling my mom, she’s been less stressed in the workplace. It has been five years and my mom is very happy. Why do people feel the need to put down other people? Life is too short and we all should get along. Unfortunately, that is the reality so having steps in how to deal with bullying should be a top priority.

My Dream Job

Back when I was young, all I ever wanted to do was to be a doctor. This stemmed from the fact that everybody in my family expected me to become one. I had no idea of my condition. The signs were there when I was little. I would run and hide whenever people came over to the house. My family and I didn’t think much of it. Now being apart of the Orange County Asperger’s Support Group as an intern has taught me a lot. From going to support groups and talking to Asperger’s like me, I know more about myself than ever before. I’m seeing how I want to live my life. My dream is to someday open a business where I don’t have to work for anybody but myself. That would be my dream job.

Judi’s Story: Helping my son Graduate from CSUF

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This is Judi Uttal, President of OCASG, with a new Blog.

This week’s blog is about my efforts to help my son complete his bachelors degree at California State University at Fullerton (CSUF). In particular, how to meet the important but difficult internship requirement. Many of OCASG members have children who either are attending or will attend CSUF, and I am hoping that my experience could be useful to you all.

Signing Up for Workability

Today, my son Joshua and I had a meeting with Yvonne Cordova, Senior Vocational Rehabilitation Counselor for Department of Rehabilitation. Yvonne is working on getting Josh admitted into the Workability Program as CSUF.  We are hoping that Workability can be of assistance in helping Josh find an internship. To graduate from CSUF with a BA in Cinema and Television requires completion of an internship (495 course). Josh is likely to graduate in December 2019. This internship is a critical step towards his receiving a diploma.

The Reel People Connection

We are also enrolling Josh in the Reel People program being offered at New Vista Academy. Through this program, Josh will be able to develop skills in After Effects. According to Jimmy Lifton, this training will be complemented by “real” employment. Hopefully this “real” job can meet Josh’s treasured internship requirement. To stay on schedule for a December 2019 graduation, we want to make this program an independent study (499 course). However, having never done this before, I am not sure what types of problems we may encounter. One difficult milestone will be finding a CSUF faculty member to act as the sponsor.

To help with the mitigation, I reached out to Jacqueline Gerali, Disability Management Specialist at CSUF. So far I have not heard back from her, but I am hopeful.

Team Josh

One of Josh’s old buddies, Josh B. is finishing up his degree in Art at CSUF with an eye towards video game development. Josh B. and his mother Diane are attempting to pursue a similar strategy. So we are working together as a team, as we try and navigate the ins-and-outs.

I will check back with you in the future to let you know our progress. Wish us all  luck.

How I Got SSI for My Son

By Government and Insurance Benefits, Personal Stories No Comments

As the president of the Orange County Asperger’s Support Group, I often hear of differing concerns from parents. One common issue is how to get their child on Supplemental Security Income (SSI). An SSI benefit, can help your child financially with a monthly stipend. It also can enable them to receive Med-Cal.  For a child with ASD, SSI is part of your child’s financial safety net. Now I am not an expert, but am happy to share my personal experience.

To Qualify For SSI You Must Have Less than $2000 and Have an Approved Disability

SSI is a means tested benefit. This means that the government requires that the individual have less than $2,000 of financial assets. Note that personal possessions — a car, home, or furniture — are not counted as assets. Some families are able to get on SSI, before their child turns 18. But in those cases, the parents must meet the strict financial guidelines as well as provide proof their child’s disability.

When Josh turned 18, he became an adult and was eligible to apply for SSI. Prior to applying, we had to do a little work. Josh had some money from his Bar Mitzvah and other family gifts. With the help of an attorney, we set up self-funded special needs trust. By moving his money into the trust, Josh was able to meet the financial requirements for SSI.

We Hired an Advocate to Help Over See the Process

We also hired an advisor to help with the process. We worked with Jim Huyck. The first step was to fill out the application for SSI. This was quite an extensive form and required many details from Josh’s medical history. In preparing the application, we also reached out to the original psychologist who diagnosed Josh when he was three years old and to Josh’s current therapist. We had Josh revisit the diagnosing therapist who wrote up a report. We also had his current therapist write a report. It was important that Social Security understand Josh’s disability and his limitations.

There is also financial information required related to Josh’s living expenses. Josh lived at home, and so we needed to pull together all our families living expenses including utilities, mortgage payments, insurance, groceries, etc. Josh needed to pay his fair share. If Josh was unable to pay his fair share, then he would lose a portion of his benefit.

Social Security also needs copies of all the banking accounts. Part of their process is to thoroughly review the funds Josh had available. They even counted savings bonds.

We then submitted the application. It took around nine months. There were occasional letters asking for additional information. At a certain point, Social Security sent a correspondence indicating that Josh would need to meet with one of their doctor’s to be evaluated. This doctor was located in a small clinic in Long Beach. I was nervous, because Josh is fairly high functioning, but the doctor told me that we had nothing to fear.

In the end Josh was approved. I was made his representative payee, which meant I was responsible for managing Josh’s money. The first payment was a lump sum that included back-pay dating back to the date that we applied for the benefit. This amount of money meant that Josh had more than $2000 in the bank. We were given a time frame to spend down the money, before Josh would be penalized for having this much cash on hand.

Josh was on SSI from the time he as 19 till he was 26 years old. I often hear that families get denied. My advice is get professional assistance. Don’t rush. Take your time and do this correctly.

Living with SSI

In my next blog, I will explain living with SSI. There are lots of reporting rules that can impact your child’s income. There are also strategies for how to manage the funds that I am happy to share.

They, the scientists from the Royal Children’s Hospital, point to the fact that the brain continues to mature beyond the age of 20, and many people’s wisdom teeth do not come through until the age of 25.

Sarah Kanapton