After age 18 you feel you should be paid to care for your child?

Last night, I sat in a meeting with other parents listening to members providing information on entering waiver services. With my open mind, one parent, who sounded and looked quite upset, said "there's no such thing as natural supports or unpaid caregivers" and "once they are adults they are your responsibility. We as parents are done." These comments were ignored by the hosts because, to be quite frank, they sounded off-putting. The delivery could have been better. As a parent of a child with disabilities I understand what she means. As a provider, I have been blessed with some information that might be helpful and explain why this woman's frustration was ignored. 

LOGIC. 

With an open mind, please consider this...

Let's not argue about it. Let's instead explore it. 

When I first opened my business, I thought of what I know: Businesses accept applications from all kinds of people. In general, you can go work anywhere you apply for a job. If you have the right knowledge, skills, experience, or even no experience, you can apply anywhere you want to. So, when the woman in the meeting said she wanted to be paid, I thought, well why not apply for a job? No one disagreed with her, she just didn't know that no one disagreed with her. 

Answer: The woman thinks she's entitled to the job because she's her child's mother. 

Well, an entity of the state says "which are you? The child's mother, or a paid caregiver?" We can't be parents and paid professionals at the same time. Or can we? Is it that you're a parent when it's convenient, and a paid professional? 

Direct Support Professionals complete 24 hours of training annually to complete and maintain their certification. They've made a career of it. They've trained extensively to get these positions. Well guess what? Parents have trained extensively too! They are the best candidates for positions as Direct Support Professionals.  They have the most experience! But here's the thing: When you apply to work at McDonalds for example, do you apply to only wait on one customer, or prepare a cheeseburger for only one person? How about a dentist? Do you work in a dentist office to only clean one person's teeth? Or do you take a job anywhere to only do one thing? The answer is no. Then why would you apply for a DSP position at an agency to only serve your own child. This is where the disparity exists. By the woman's own saying, parents should be paid caregivers. She isn't wrong per se. She can be a paid caregiver, but if you accept a position, you have to be willing to take on ALL the duties of that job, and not just for your own child. This is where argument usually ensues. Some parents wish there was a way to just get paid when their child becomes an adult. Social Security pays for them to care for their child's needs while they live in their homes. They manage that money most of the time and care for them day to day without pay. 

Let's look at it on the other side. Two sides to every coin.

Parent argument                                                                               State's argument

You want to be paid.                                                                         You don't want to be a DSP

You want to be a DSP                                                                       You don't want to follow the laws                                                                                                                 and regulations of DSP

You want to be paid while your                                                          Watching tv isn't in the ISP and   child watches television                                                                       isn't billable.

You don't want to do annual trainings                                                We require professional                                                                                                                              development 

I am a legal guardian and I want to be paid                                       You volunteered (the definition                                                                                                                  of guardianship) so you can't                                                                                                                       be paid

If we want to be paid as caregivers for our children, we say that out of fear of meeting yet another person who we don't like. A lot of the past caregivers we've met have rubbed us the wrong way, instilled fear in us of trusting another person, didn't follow what we wanted. Mostly fear is the reason that meeting someone new is scary, and we don't want to go through the bad experiences we've had, some horror stories, and some situations that in hindsight weren't as bad as we probably thought they were going to be. We clutch our kids tighter and don't want them to be out of our sight. We've lost hope of finding anyone, or we're just afraid to, or both. Or there's this burden of guilt we feel over letting go. Whatever it is, and maybe it's all the above, we start to judge future people that could be wonderful. This is where my experience as a provider has observed some situations and went "Dear God, I hope I don't do that or sound like that." The fact is I probably do! I am sure we've all given folks a hard way to go at some point. Our measuring stick sets the bar low- if they have a pulse then maybe..... If they look nice then maybe.... If they can keep him/her active and engaged then maybe...

We forget that there are good people out there. Finding them is hard in some cases when we don't ask the right questions. For example, have you ever asked the following:

Do you have a college degree?

Do you make more than $15 an hour?

Where do you see yourself in five years?

Does the provider you work for have personal experience with people with disabilities

What's the origin story of the company you work for?

What trainings did you have to go through in orientation?

How long have you worked with adults or children with disabilities?

Are we asking the right questions?         

Finally, we expect Professionals to stay. Unfortunately, as parents we might ruin that, and if we don't, the state will.     We become helicopter parents, or adversely work-aholic and/or nonexistent when our children receive services.        The state also requires providers to complete exurbanite amounts of paperwork, emails, phone calls, compliance standards. Its exhausting to think about. The amount of work isn't necessarily equal to the amount of pay. Like for example, did you know that the cost of reimbursement for services leaves the provider with a deficit if they reimburse mileage to employees? $40 is what a provider gets for an hour of In home & community support service and they pay insurance, state, federal, and local taxes, employee insurance, worker's comp, unemployment, mileage, and any expenses the employee incurs from taking your child in the community to places that require entry fees or bills. Health insurance, sick time, vacation time, all not paid for by the waiver if the employer is paying a living wage, which is around $20/hr. 33% of that $40 goes to taxes. At the end of the day there's 10 cents left. And if that employee submits mileage, it's gone. This is why most providers underpay employees because they have to pay the bills, and when they do that, employees quit. 

On the other side, you want a DSP to do things the way you do it because it worked for you. You never or rarely walked into your child's school and asked the teacher to teach the way you do. So why do it when the DSP is in your home? Now, I ask that with the knowledge there are exceptions. Some DSPs will need further guidance to complete a task, but how they get it done will surprise you if you let it. Do you hold on too tight? Can you let your guard down but not completely? I am asking this as a mother of a child with autism, and I still struggle with this. Consider this: If your child is alive at the end of the day, has all his/her fingers and toes, and did something other than sit still all day, that's a pretty good day. If there was a way to coral all parents of children with disabilities together and get this message across, we could possibly improve DSP performance and then raise the bar incrementally to ask for more. Afterall, there are still some of us out there that just downright scare people with the sound of the fear and frustration in our voices, change providers rather than DSPs every time something doesn't go our way, or there's a mishap, and so much more. Making correct decisions is a learning process. Letting go is a challenge. 

I hope this helps people to understand that we are all still figuring it out. We all have a voice. I wanted my readers to know that I heard this woman's voice. Although she sounded off putting to the host of the meeting, I don't disagree with what she was trying to say. I just wanted to share my thoughts on it. Yes, you can be paid to provide services to your child if you apply for a job. But if you apply for a job, then accept all that comes with it. Become a professional and be willing to separate your parental role. Understand the providers do a lot of work to keep your services active so you might have to manage the communication. DSPs often don't stay very long. They typically have career aspirations. Just because the DSP doesn't stay, if they told you they work for a good company, stay with the company because it usually means that the company hires good people. Let go of the reigns a little. You did a lot of work with your child to let them make choices, and you have laminated a list of things to do and the order in which to do them.  Ask the right questions and have hope. Understand the service that you are getting and all that is required. Work together and not apart from those that provide the service. Most often no one has ill intentions and we all want the same thing if you've chosen a provider with experience that matters.