I don’t believe in making my blog a political site. I want all people with all views to feel welcome here. However, government support—and the lack thereof—is a fact of life for every special needs family. As such, I feel like it’s a topic that should be addressed.
Researchers have discovered that when we post our political beliefs in an attempt to persuade others, it usually has the opposite effect. We end up alienating people with views different from our own. Even facts and figures can be construed in different ways or completely discounted. Studies have shown, however, that there is something else much more helpful and less divisive—personal experiences.
This is why I’m not going to tell you what you should or shouldn’t believe about the role the government plays in the lives of special needs families. Instead, I present to you the story of one particular family and what we went through with our child.
My family is fortunate enough to have most odds stacked in its favor. My husband—with whom I have a loving, supportive marriage—is employed full-time, and his job includes good benefits. We own our own home, live in a safe neighborhood, and have access to transportation. With the exception of my youngest daughter, JJ, we are all in good health.
However, when it comes to receiving government support, we are less fortunate. We’re one of the many families stuck in the middle. We make too much money to qualify for Medicaid, but not enough to be able to pay someone to care for JJ in the way that she needs. Her medical complexities and occasional behavioral issues make it impossible to leave her in unqualified hands. Instead, I have given up my career in order to care for her myself.
When JJ was two, she received a diagnosis of autism. Because of this, we were able to apply for state assistance for medical reasons. We qualified for the Autism Waiver—a program that includes family counseling, parent training, and respite care. At that time, we were number four hundred and sixty-two on the waitlist. No one could tell us when we would come off the list, only that it would be a long time. Three years later, we still hover around number two hundred.
JJ received her diagnosis of Rett Syndrome when she was three. This led us to explore another type of government assistance available to a family like ours. The Intellectual/Developmental Disability (IDD) Waiver Program provides things like personal care services, overnight respite, specialized medical care, adult day services, and residential support.
Th IDD Waiver offers exactly the kind of support a family like ours needs. We juggle a complex web of medical costs and struggle with intensive caregiving tasks. JJ has lost her ability to walk on her own, so we lift and carry her thirty-five-pound body everywhere, including up and down the stairs in our home. She cannot feed or clothe herself and needs about a dozen daily medications. Her equipment is varied—gait trainer, eye-gaze device, wheelchair, leg braces, and orthopedic shoes—and very expensive. Her communication device alone costs $15,000. As mentioned, most family members and typical babysitters are not capable of caring for JJ safely and correctly. Instead, my husband and I pay a daily co-pay for in-home behavioral therapy and then struggle through many of the long evenings, nights, and weekends alone.
When I researched the IDD waiver, I came upon a very unwelcome surprise. JJ would become eligible for services when she turned five, but the waitlist for those services was nine years long. If we remained in our state, it would be a decade before we found any relief from the financial and caregiving burdens we were experiencing.
These are the facts involved in our family’s story, but what you can’t know from reading them is how it felt to be a caregiver in a situation like this.
More than anything else, I felt hopeless. I was working day (and night) administering medications, lifting and carrying a heavy child, meeting all her personal care needs, and juggling her many medical appointments and therapies. It was a hundred times more difficult than the job I had given up, was entirely unpaid, and didn’t seem like it was going to end any time soon. I didn’t have much faith in the future, either. When you know help isn’t coming for a decade, it makes for a very dark headspace.
It was also extremely lonely. Few people could help care for JJ, and it was difficult to transport her and all her equipment, so our family abandoned the things we used to do. We didn’t take vacations. We limited playdates and gave up on school functions. We attended very few family events, and my husband and I went on a date about once a year. On the weekends, the two of us traded caregiving shifts, over and over and over again, so that the other could have a short break.
When you are responsible for someone who has needs as intense as JJ’s, it feels all-consuming. I didn’t have time in my life, space in my brain, or energy in my body for anything but caregiving. I stopped providing emotional support for friends and family. I no longer followed the news. I only read books and watched television for escape. I was sleep-deprived and exhausted all of the time.
I also felt like a terrible mother to my oldest child. I had little time for RoRo and even less energy to deal with her problems. I was thankful she was such a well-behaved child, though that in itself was concerning. She would cling to me often, watch me worriedly, and tell me constantly how much she loved me. It didn’t seem like normal behavior, but I had bigger issues to deal with, so I let it go.
When JJ was four, everything changed. In a short amount of time, she was hit with a series of illnesses, which led her to stop eating and drinking altogether. Finally, she became so dangerously dehydrated we had to take her to the emergency room. While at the hospital, a feeding tube was surgically placed in her stomach so she would never be in this kind of danger again.
The feeding tube saved JJ’s life, but in a way, it also saved our family. Along with the tube came the government assistance we had so desperately needed for years. The tube was considered “life-saving technology,” so we became eligible for our state’s Technology Assisted (TA) Waiver program. The TA Waiver qualifies families for Medicaid, but also provides things like specialized medical care, personal care services, medical respite, and home modifications.
The TA Waiver changed our view of our family’s future and opened up a world of possibilities. My husband and I now knew we wouldn’t have to pay for the $15,000 eye-gaze device we had been about to purchase for JJ. If we wanted, we could do a home remodel and make our house more accessible for our daughter. We could take JJ to more therapies and pay fewer co-pays for her constant medical appointments. But best of all, we could hire professional helpers to babysit her in our home for forty-five hours a week.
Of course, it wasn't a perfect system. We would still be dependent on other people who would have their own lives, schedules, and struggles to deal with. We came upon the government aid through a strange twist of fate, and it took weeks of paperwork, multiple phone calls, and an unlimited amount of patience to navigate all the new systems we were a part of. Again, I realized how fortunate we were. I am well-educated, fluent in English, free from work obligations, and able to advocate for myself and my family. I'm not sure how well I would have fared otherwise.
Despite all this, the shape of our lives has already changed drastically in the two months since the government support began. We have hired several kind, competent helpers—a nurse, a nursing assistant, and a para—to rotate JJ’s care in our home. JJ has been delighted with the undivided attention, and the help has allowed the rest of us to lead less insular lives.
Several weeks ago, I attended my first school function with RoRo. After that, I went out to dinner with some girlfriends, free from the guilt I usually feel when I leave my husband at home alone with JJ. RoRo has stopped clinging to me and started shirking chores and begging for treats like any other kid. Yesterday, I found myself catching up on the news for the first time in months.
As I write this post, JJ is downstairs with one of her helpers, demanding goldfish with her talker while the woman feeds her and laughs indugently. RoRo is in her room getting ready for a friend’s birthday party. In our bedroom, my husband is taking a much-needed nap after a long night of interrupted sleep. And me? I’m sitting in front of my computer, doing one of my favorite things—writing about our lives.
And there you have it—one family’s story, before and after receiving support for a special needs child.
Make of it what you will.
What are your thoughts and feelings about families receiving aid to care for their disabled and special needs children? Let me know in the comments below.