Ep 4: Who Cares About Those Who Care?

In this episode, Mandi explores the struggles people with disabilities may face when needing full-time care and the lack of support for caregivers in America.

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Transcript

Mandi: Mandi Frantz here welcoming you to my podcast - Find Your Beautiful: Life Through the Eyes of a Christian Disabled Woman. 

[Upbeat Background Music]

Mandi: I have the honor of being the Executive Director of KEEN New York, a nonprofit that empowers youth with disabilities by providing free programs of exercise, fitness, and fun led by volunteer coaches. Part of KEEN’s vision is to provide respite and a supportive network for the parents of these young Athletes. This idea of a caregiver needing respite has been a tough concept for me to come to grips with. Honestly, I see the extreme need for it when I’m with the families I work with. While I know caring for their kids is a part of their everyday, I can only imagine how nice it must feel to know their kids are having fun and safe so that they can get a bit of “me” time.

Heck, I have 2 little ones of my own. My youngest is heading into the Terrible Twos and sometimes I think my soon to be 5 year old, never left. There are times I’m exhausted and just having them in Sunday School and the Nursery at church on Sundays is a great reprieve. I’ll be honest though, when I was a first-time momma, I felt guilty about wanting a break from my son. I felt like it was wrong, or somehow made me a less than great mother. I never want my kids to feel like they are burdening me. I came to realize that I was projecting.

Since I live with my disability, it easily fits into my life and I’m used to needing people to care for me. When I was young girl, I dreamt of my knight in shining armor delighting in caring for all of my needs. Like most young girl thoughts, I was being self-centered, never thinking about the fact that disability may not be the norm for my future husband. Caring for a child or a spouse with a disability is a full-time job! In regards to children, this job can be divided between spouses, other relatives, nannies, and even teachers at school. For spouses, this job may get divided between home attendants, community habilitation workers, sometimes relatives, and older children. Even as I’m saying this, I’m finding myself uncomfortable with the idea that I am often considered a job. I know my husband doesn’t always see my care this way, probably not even all that often, but he is human and he gets tired. Add 2 toddlers to the mix and it’s truly exhausting. It took me a long time to realize that just because my husband isn’t working out of the home bringing in a paycheck, doesn’t mean he isn’t working. In fact, I’ve come to a place where I’m frustrated that spouses can’t get paid for this work. Only recently did New York start making some concessions about paying parents to care for their children, but there are still many hoops to jump through to be eligible for this.

Today I’m going to wrap up, for now at least, my direct discussion about the American System and tell you that caregivers need care too. Who is caring for them?

                                            [Mandi voices Ad (ads change and will vary)]

[Doorbell Sound Effect]

Mandi: If you tuned into last week’s episode and watched Jason DaSilva’s video, “Mapping the Disability Trap,” then you now know that home care services for people with disabilities is still a relatively new, and sadly not wide-spread, concept. As Mr. DaSilva demonstrated in his numerous calls to healthcare agencies in different states, people with disabilities who require full-time homecare services are forced into nursing homes in many of these states. As he also noted, New York is one of the best states to live in for people with disabilities because of its service options. However, this by no means indicates a flawless system.

We’ve already discussed the craziness that is Medicaid and the insane costs of healthcare, especially for people with disabilities who tend to have more medical needs. Getting full-time at home care is incredibly difficult! Insurance does not want to cover the expense of full-time care for most people and the best way to demonstrate your need is to prove you have no one to care for you. However, this is again a catch 22 because for people like me, we can’t live independently without a high level of interdependence with others. As I mentioned last week, my mother had to legally disown me when I turned 16 so I could receive the benefits I was entitled to. For fear of me losing my benefits, she was avidly opposed to me getting married for a long time.

When I first met my husband, I was 18 and he was 19 years old. We were both full-time college students with part-time jobs. We fell in love very fast and a year into our relationship, he popped the question. I promise to share all the mushy details of our love story in another episode, but we waited almost 2 years after our engagement to get married. Many people said we were too young and my family in particular were terrified for me. My mom even suggested we have a wedding ceremony, but not sign any legal paperwork to avoid the issues we would soon find ourselves up against. We were blinded by our young love and determined to live “normal” lives, so we ignored all the warnings and tied the knot!

Almost immediately, I had to send in documentation to the Social Security Administration and Human Resource Administration showing my husband’s income and proving the number of hours he worked. It was dangerous to have him at home when my nurse, or any other agency rep, would drop in because it might indicate that he was available to take care of me, eliminating my need for home care services.

In 2011, our lives took a major spin, which I’ll detail in the future, but my husband and I decided it would be best for him to take some time off from working and mind his health needs. Again, the flood of questions and the need to prove my need for help started again. After having my kids, we knew that having my husband be a stay-at-home dad was the best thing. However, we need a lot of help! Where most 2-parent families can divide physical work between them, everything was left up to him. We found out that ACS provides a service called homemaking, where a person can come to your home and help with caring for the needs of the children. This program is supposed to help ACS meet their mission of keeping families together. We really need this service because it is a lot for one person to care for 2 toddlers and take care of  the needs of a disabled adult too. As it stands right now, ACS is trying to strip this service away from us because my husband isn’t work, so they believe he should care for everyone with no help. Instead of preventing high stress and anxiety, which often leads to problems we see in the media like child neglect and abuse, they want to take away the very support that helps keep our family together and functioning in optimal condition.

As many families, whether affected by disability or not, know, it is hard to work and have kids. My husband can’t work during the day because he needs to be home by 2pm to care for our baby when the homemaker leaves. He also can’t bring in too much money, because then I’d lose all services. He can’t work at night because I’m not entitled to 24-hour care since I’m married and the government believes I’m his responsibility. In case I didn’t mention, he also can’t be paid to be my caregiver.

In New York, there are programs that allow individuals to hire their own staff to be their personal care workers. However, the stipulation across the board is that they can’t live with you. As I mentioned earlier, there are recent changes that allow you to make some concessions for parents, but beyond not residing together, you can’t hire your spouse. Now I can see how getting paid to care for your husband or wife can be a conflict of interest, and may make my feelings of just being a job more complicated, but it’s bizarre that for these self-directed programs, you have to prove your ability to make sound decisions and direct your own life, yet that decision-making ability isn’t good enough to truly hire the person you want caring for you. It seems strange that our country would rather me hire a stranger than someone I fully trust to care for my most intimate needs.

My husband, like many other spouses and relatives of people with disabilities, is in an odd position. He can’t be too successful at work. He can’t work too many hours. He can’t be home too often, or gone too long. He either has to be a caregiver 100% of the time, or barely at all.

We are once again fighting, trying to get this point across to those who hold our sanity in their hands. We have been blessed with an amazing community of friends and family, who support us so much. We’ll continue the good fight in search of our Beautiful!

[Sudden Transition Sound]

Mandi: Paying spouses and relatives is a bit of a hot topic! What do you think? Should spouses be able to get paid for being a caregiver?

[Bling]

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If writing is more your thing, you can email me at th3mandibox@gmail.com, or find me on social media at MandiboxBeauty.

[Mandi voiceover to 'Compton' music]: Now that we wrapped up our brief discussions about the American System, I’ll start talking about relationships, marriage, and sex with a disability. Tune in to next week’s episode titled, “What’s Love Got To Do With It,” where I’ll talk about the power of love. ‘Til next time Beauties!