What’s a Parent to Do?!

I met with our case manager yesterday.  She’s the one who discusses services and funding, etc.  Essentially the gatekeeper to all funding.  She’s a wonderful person and has a tough job.  I’m sure she faces a lot of confrontation.  So, I give her credit for doing a tough job.  Toward the end of the meeting, she shared that at the end of the year, we need to complete a document to discuss any potential conflict of interest.  I inquired further.

Let me take a step back.  In many states, once a child turns 18 and is deemed an adult, someone needs to care for them if they cannot care for themselves.  For many children [adults], that means parents continue to do what they have done for the past, almost 2 decades.  The only difference is that now, the government will pay for 40 hours a week.  For a child like mine, that’s a drop in the bucket.  He needs support 24/7/365, so I’m paid for 40 out of 168 hours per week.  That leaves 128 unpaid and for 45 of those hours, he’s at school, so 83 unpaid hours.  Now, I’m grateful for that because he’s my son and he’s my responsibility.  So, getting anything is appreciated.  But, he’s a young man with no concept of safety, a man who needs support with all of his life skills…all of them…and requires constant support.  I’m always “on”.  I never drink too much or stay up too late.  I sleep with one ear and one eye always open.

The document discussing a potential conflict of interest is valid.  I get it.  There are people out there who would forego their child’s needs so that they could pocket the cash.  I know there is evil out there.  I know people can be horrible humans.  I’m not one of those people.  My son’s needs are and always have been my primary concern.  Maybe, just maybe, I’m slightly offended.  He’s engaged in the community.  He’s always clean and well cared for.  He has a nice bedroom and his environment is clean and safe.  They visit every 90 days and see him.  He goes to school every day and people see he’s cared for…why check me out?!?

So, when I was told that everyone had to go through this conflict of interest process, at first, I was like, great, let me know when.  Then she added that the government wanted to make sure that no one was relying on the funding as income.  My wheels started turning and my blood pressure started boiling a bit.

I live in Wisconsin and my state, like many, encourages and works hard to keep the disabled in their homes and with their families.  This is wonderful and as it should be.  Advocates across the country fought to get funding that would support this option.  I’m grateful for this.  I live in a small town.  Finding caregivers is difficult.  I’ve tried many times over the years.  Either the applicants are gravely unqualified or non-existent.  Also, they can make more working at Aldi than working for us.  So, my mom moved with me to help care for my son.  She is now almost 77.  He is 5’9” and she is 4’11”, on a big hair day.  Two years ago, it became obvious that she could not care for him forever.  He is bigger, stronger and more stubborn than her.  Decisions had to be made.  I decided that I would leave my job and start a business.  I left my job with mountains of student loan debt, because I had worked hard to obtain multiple degrees to chase my dream of being a district administrator and changing the world of special education.  Well, life happens. Life happened.  I said goodbye to that dream with the goal of building another.

I have a part time gig, get paid to care for my child and am working to build a business.  My part time gig is one that I work while he is sleeping.  I work from home.  If I lost the care for my son, I’d survive, so there really isn’t the conflict of interest issue.

But, it got me thinking.

What about parents who don’t have the means to start a business?  What about parents who can’t find a part time gig they can do from home while their child sleeps?  What about parents who can’t find day programs for their adult and can NEVER LEAVE THE HOUSE alone?  What about single parents with no other support?  What about these parents?  HELL YEAH, they need the funding!

And, I know, if you don’t live this life, you may think that I’m speaking of a very small percentage of people.  No, my friends, guess again.  This is, sadly, not uncommon.

Why shouldn’t they receive the funding without justification if the child is cared for, supported and engaged in life?  When my son first turned 18, I was appalled that they were going to pay me for caring for him.  I am his mom…why would you pay me?  My case manager explained that while he will always be my child, he is now a man that needs someone to care for him.  Either I do it or someone else would…I could choose.  Well, when you put it that way…

There are so many hoops to jump through and justifications to be made when receiving funding.  I think it’s more frustrating to me because I know people who should never receive disability checks, fake disabilities, hide income, yet they head to the bank once a month on their way to their job that pays them cash.  People screw the systems all the time.  I never understood how since we are under such a microscope.  Do you know I’m not even allowed to take my son out of the state without advanced notice and if I take him out of the country, I cannot get paid.  So, if I’m giving him the life experience of going to Canada to see Niagara Falls, it’s on my dime and I cannot get paid.  So frustrating!

Parents across the country are having to leave jobs, careers, to care for their children with disabilities.  We take the leap of being jobless and figuring it out because our children are important to us.  But, we need help.  Why shouldn’t they be compensated?  The answer is that they should.

Perhaps the government should put together databases for work from home opportunities.  Perhaps they should begin building alliances with corporations to provide opportunities for parents to work from home and non-traditional schedules.  By caring for our children long into adulthood, we are providing a much greater quality of life and, frankly, saving the government and taxpayers millions.

If the government is going to crack down on parents, make sure everything is legit, that’s cool.  I have nothing to hide and if someone is hiding something, I hope they are discovered.  I, however, want to see them crack down on people who abuse the welfare and disability systems.  Parents of kids like mine, for the most part, are just trying to make it through the day!  We are legit parents trying to care for our child, plan for their future and make sure the lights stay on!



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Disclaimer:  There are exceptions to every rule.  Children and adults with disabilities are people with their own individual needs and desires.  The ideas and advice given in this blog are for your consideration only and should not be taken as legal, medical or educational advice, as every single situation is different.











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