The United States is the land of opportunities for everybody. People can get their college degree or start their own business or climb the corporate ladder or write a book that sells millions of copies. The opportunities are endless for all people. If you are a person with a disability, you have money from the government for your personal assistants and other things, so you usually are scared of getting a job because you don’t want to lose your benefits.
Issues With SSI And SSDI
This fear is real for so many people. How do we solve this problem? Last year the unemployment for people with disabilities was 7.9% which was double the number of people who don’t have disabilities. Shocking? I am not shocked because the fear is real, and people don’t know what is available, so they could have a job and continue getting their benefits.
If people with disabilities have SSI or SSDI, they only can have about $2,000 and $3,000 if they are married in their bank accounts. That is not a lot of money to have. If they get a job and go over these amounts, they will have to return some of their SSI or SSDI. Is that fair? Absolutely not and it is a big pain to return the money.
There is a special bank account call Able checking account where the government does not penalize you for having over $3,000. You can have a maximum of $450,000 in this account and can still get your benefits. In other words, you can have a job and continue to receive your benefits. The issue is that not every state has this program set up yet, so you have to check with your state if they have it.
Illinois Able Accounts
Illinois has it set up for a while now and continue making improvements. What I am going to talk for the rest of this article is about the Able accounts in Illinois so if you are in a different state, the things that I am saying might or might not be in your state. So, you have to research for your state.
Who Can Have These Accounts
The people who can open an Able checking account must have a disability before the age of 26 although this might be raised to 40 soon. It makes sense because of all of the military service who are injured in combat. I think the age should be removed altogether because disability can happen at any age. Parents of kids with disabilities or power of attorney can open an Able account for the child at any age. It is better to open an account right away, so the child can grow their account.
The Able accounts are maintained by TCF bank, but to open an account up, you have to go to this website to sign up and after that, you will work with TFS bank with the day to day transactions. The initial setup process is only by the website.
You have to put in at least $25 when you open the account and can only put in up to $15,000 every year. So where can the money come from when you deposit money? It can be from any source – your SSI or SSDI checks, paychecks, money gifts for birthdays and Christmas, from your special needs trust, etc. You have to remember that you can put a maximum of $15,000 each year. If you put your SSI or SSDI checks with your paychecks, keep an eye on the total amount that you put in because I don’t know what will happen if you put in over the limit.
The question that you are wondering about is what you can use the money for. Well, if the money is for something for you, it is fine. If it is a new computer or a new wheelchair, these things are what you need. Say that you want to go to college, it is legally fine. You could go on vacation with your personal assistant. The thing to remember is that they could audit your spending so if you can justify that you had to go out of state for a wedding, it should be ok.
On the other hand, you cannot buy a gift with the money. I heard that a guy wanted to buy an engagement ring for his girlfriend, they said no. You have to keep track of what you spend with the money so if they come and audit you, you will be prepared.
The Money is Yours
The money is yours so if you were to die, you could give the money away. The state can’t touch it at all. This is important to remember because you might want to have a will made. There is something to note here and that is if you move to a different state and you already have an Able account, you can’t open another account. You can only have one account.
With Able accounts, you could get a job and don’t have to worry about losing your benefits. By working, you will learn things that you cannot learn elsewhere. For me, I learned how to respect my bosses and coworkers. Yes, you have to respect your family members, but with a job, you can see the consequences more. Having a job gives you a purpose in life. We all should have a purpose in life, so we could change the world.
As we are slowly getting back to the new normal, I have to share a couple of thoughts about what happened over the last three months. We had the Covid-19 pandemic which is still going on, although it is getting better. We see thousands and thousands of people die from this pandemic. The doctors and researchers are learning what we have to do to stop it. Yes. They are saying things that contradict what they said, but it is all normal with research.
Institutions in Illinois
For decades, people with disabilities are put in institutions to keep them “safe”, but these institutions never kept them safe- rather they are dehumanizing the people to a point where animals are treated better.
Back in March, we were told to practice social distancing. We had to change our lives to stay healthy- so we did. Did the people in the institutions get the memo about social distancing? No, they did not so they went on living. The number of people who got COVID-19 was 158 out of 1,691 residents and were in Illinois institutions. This was from the Illinois Department of Human Services back in April 2020.
Let us compare this with people with disabilities who use Home-Based Services and live in the community in Illinois. There are 8,000 people who use this service and there were 18 individuals who received COVID-19 during the same time frame.
These two statistics are shocking to me because this shows that institutions are totally dangerous for people with disabilities once again. I have not heard anything about institutions on the news. You might be thinking about nursing homes, Chris. No, I am not. Institutions are much larger than nursing homes and the people are in big rooms doing nothing. Sometimes they are in the nude because there aren’t enough personal assistants to dress them.
Now two weeks ago, George Floyd was killed by four police officers in Minnesota. This was very wrong at what the officers did to George. We thought that he was a nice standing citizen who was killed unjustly, but that is not the case at all. George Floyd was in jail five separate times. On the day of his death. He was high on drugs and tried to pay for something with fake money. The police asked him to step out of the car and he didn’t do what was asked of him.
Were the police wrong with what they did? Absolutely! Without any questions asked, but if George Floyd did what the police asked him to do, none of these riots would have happened. Again, the police officers were at fault and should go to jail. Yes, people should be frustrated, but rioting is a huge mistake. If we ask the protesters what they were protesting for, they would say George Floyd. If they were told the truth, would they still protest? Sounds a little debatable.
We hardly hear about protesting for people with disabilities by the regular society in big numbers. To die in institutions, it is inhumane, and protesting should be done like the case of George Floyd. People who have died in the institutions have done nothing wrong period and society is not outraged by this at all. How sad! Are we living in a society that is totally unfair? I truly wonder where we are heading, and I feel awful knowing that people who died in institutions died alone. Yes, people died alone in hospitals, but they hopefully had caring nurses taking care of them
We Need to Speak Up NOW
Do you know that it is cheaper to have someone in the community with Home Base Services than in an institution? Yes, it is by far. The next question is why don’t the law makers do something about it? The problem is that they do not know. If we don’t tell them, it is not on their weekly meetings, they don’t know about the issue. We have to always write them and invite our family and friends to do the same. If we truly want real change, this is what we have to do.
If you like YouTube as much as me, you have seen videos about Myka Stauffer and her family. If you have not heard what was going on, I will give you the cliff-notes version of what happened. Myka Stauffer and her husband are known as YouTube creators. They have three channels that have well over a million subscribers. They have three kids of their own and adopted a boy from China. They did videos about the adoption process and after they brought the son home, they videoed their lives with him.
Myka Stauffer knew that Huxley had Autism from the start and the couple was fine with that. Actually, they asked for a child with special needs, so it was not something that they did not know about. Huxley had a difficult time adjusting to his new family, but he became comfortable being with Myka. Earlier this year, people stopped seeing Huxley in videos and on other media platforms. Sadly, old pictures and videos of him were taken down, and people were asking questions about what happened with Huxley.
Last week Mr. and Mrs. Stauffer made a video explaining what happened to Huxley, and mainly they said they had to give him up for adoption. WHAT? Yes, they had to give him up because his medical needs were too hard to handle. Besides that, the adoption agency didn’t tell them everything about Huxley. They gave him to a family who the wife was a nurse.
This hurts me very much and I am going to explain why. The first reason is how they did not know every medical issues Huxley had. Yes, the adoption agency should have disclosed everything to Stauffer, but does a child come with a manual when they are born? The answer is NO! My parents didn’t know that I had Cerebral Palsy until I was a year old. They had a hard time feeding me. Myka Stauffer knew that Huxley had Autism upfront. She could have read up on Autism when they started the adoption process. Did she? I doubt it.
Helping Huxley VS New House
The next thing that bothered me is that his medical care cost was growing. My answer is so what. By the way, they just bought a new house because she is having another child. How does this make sense? We cannot handle the extra cost for him, but we surely need a bigger house. Can someone explain the logic in this to me please?
Helping Other Parents
Oh, this next reason is really heartbroken. Did Myka Stauffer really think about how giving Huxley up again will affect him? You can say that kids move from family to family all the time. This is true, but at the same time, kids with Autism need stability because if something is different in their lives, they regress a lot. Didn’t Myka know that or did she put her needs above Huxley?
Being a YouTuber, you have a lot of influence on people. There are a lot of helpful influences but also a lot of bad influences. What Myka Slauffer did was very bad. Here‘s why. She just told the world that it is ok to get rid of kids with disabilities because it was very hard. With videoing Huxley through the two years they had him, it helped so many other parents with kids with disabilities. Now, who knows what will happen to these parents? We got no way of truly knowing the impact from their decision.
Anyone who has ever had to look for personal assistants can tell you that finding a good personal assistant is very difficult. As Chris Lenart discussed in a previous post, “caregiving is a job where a few people can do well,” and anyone who decides to be a full-time personal assistant has a lot to consider. The lives of people with disabilities wouldn’t be the same without them, and many of us – even the families of those with disabilities – come to rely on them greatly.
However, how often do we stop and think about who is taking care of them? Sometimes, people who take on roles as personal assistants end up with “personal assistant burnout” – a state of physical, emotional, and mental exhaustion that comes from just giving too much of themselves to the people they care for. It’s a sad reality of working in the field, and family members who take on these roles are even more susceptible. It’s important that we recognize the signs and symptoms of burnout to ensure that the quality of care our loved ones receive remains on point:
The Signs and Symptoms of Personal Assistant Burnout
Ageucate lists the following as some of the most common signs of caregiver burnout:
Anxiety, depression, and irritability
Feeling tired and run down
Overreacting to minor nuisances
Drinking, smoking or eating more
Feeling increasingly resentful
If unaddressed, stress and burnout can impact not just the quality of care you give, but also your relationship with the people you care for. You may start to feel powerless, and stuck in a cycle or a role you didn’t expect, helpless to change things. It may continue to drain your emotional reserves until you start to grow resentful of the responsibilities you have taken on. So, here are some ways to combat caregiver burnout before it gets out of hand:
Fighting Personal Assistant Burnout
Everyone deals with stress differently, but there are some universal ways to help you deal with the stress of being a personal assistant. HelpGuide.org explains that practicing acceptance and avoiding the “emotional trap of feeling sorry for yourself or searching for someone to blame” is one of the best ways to get over the feeling of hopelessness. It’s important to embrace your choice to become a personal assistant and think of the ways that what you do has made you stronger and a better person.
It’s also extremely important to not neglect your own well-being, and as such, you shouldn’t let your role as a personal assistant take over your life. Remember that it doesn’t define you and that you need to invest in other things that give your life meaning and purpose. You should also get enough to eat, enough exercise, and enough sleep. Parsley Health details that in order to reduce stress, you need to “flex your parasympathetic nervous system, which is engaged during rest and relaxation and helps to calm your body and your mind”. They recommend incorporating more yoga and meditation into your daily routine to help your body and your mind deal with the stress.
Lastly, as Hospital News emphasizes, you need to recognize that you aren’t alone. Even though it may sometimes feel like the burden lands squarely on your shoulders, you aren’t alone on your journey as a personal assistant. Talk to someone you trust – be it a doctor, a friend, a family member, or a therapist – to see that you get the help you need.
Many devices offer a range of options to suit an individual’s needs and to minimize the restrictions on their day to day life.
1. Medical Guardian
This is one of the highest-rated alert
systems at present on the market. With pricing starting at $29.95 a month, this
device supports over 200 languages and doesn’t require a long-term contract.
It’s perfect for short-term medical conditions or people who don’t want to
commit to a contract. The only commitment is a 90-day service agreement.
Depending on the plan you choose, the
device can detect falls either at home or outside, and alert the emergency
numbers and family members on a contact list.
With an optional mobile plan to use the GPS, the power lasts for up to 32 hours per charge and, with easy installation to boot, it’s clear to see why this is such a popular alert system.
2. LifeFone At Home
One of the great things about this system
is that there is no need for a landline with the home cellular package, which
starts at $30.95 a month. This is perfect if you’re reasonably able to get
around the home but tend to struggle when out and about. Otherwise, you can opt
for the Home and On-the-Go package for a little more assistance.
You can also subscribe to extra services such as daily check-in calls, medication reminders, and location services.
3. Bay Alarm Medical + GPS Medical Alert
The monthly subscription for this starts
at just $19.95, with no long-term contract required and with monthly, quarterly
or semi-annual payment options to choose from.
If you’re looking for a medical system for a loved one with dementia or
Alzheimer’s disease, this device can send you (or another contact) an alert if
they leave a certain area, making it easier to find them if they happen to get
lost or become disoriented.
4. Mobile Help
Mobile Help is another popular choice for
medical technology. With coverage in all 50 states and an A+ rating from the
Better Business Bureau, this wearable device offers two-way communication, a 1000-foot
range from the base unit and up to 600-foot range outside the home.
Mobile services are optional for extra
peace of mind when away from home. GPS tracking helps to locate the wearer if
Like many of the medical devices mentioned here, the wristbands and pendants are waterproof. The monthly charges vary depending on the package but are quite reasonable with several payment options. Fall detection is available too, although at an extra charge.
5. ADT Health
While rating a little lower than some of the other devices, this is still A+ rated – and from a business that has operated for over 140 years from around 200 locations across the US and Canada.
Home temperature monitoring is included
too, and panic pendants are optional. While some features are limited, there is
the option to pick and choose from available services to match your exact
For any of these or similar devices, it’s
always best to check the prices and options to suit your needs. Some are easier
to use than others, but they are all designed to get help easily and therefore
will be easier to use than most technology, even for technophobes.