My partner and I thought we were braced for a repeat of the same process we have been through so many times in the last nearly-19 years over the with the latest round of evaluations by the local county team for MNChoices eligibility.
It started out the same way that so, so many other evaluations have: by talking about what Oldest Child couldn’t do: what he couldn’t do at all, what he couldn’t do without 1:1 supervision, then what he couldn’t do without constant verbal prompting, then what behaviors he had that could be construed as dangerous or aggressive to others or harmful to himself.
(Make no mistake: my partner and I hate these questions. They are chock full of an extra scoop of ableism and parental pain, like an ugly existential version of a Trademarked Breakfast Cereal.)
Just when we thought we were through the questions, we got a new one. “So who do you leave him with when you go away overnight?”
…go …away …overnight?
…go AWAY overnight?
“Together?” I felt compelled to clarify.
“Yes.”
“Without Oldest and Youngest?”
“Yes.”
My partner and I stared at each other for a second and then he finally said, “Well, pre-pandemic, we would drive to Ohio, and their grandparents would keep them for the week so we could work… that was really about four days once a year?”
“And during the civil unrest, both of them stayed with a friend in the suburbs last May,” I offered. “But that was really due to exceptional circumstances.”
“Other than that,” my partner said, “Only one of us goes anywhere on trips at a time.”
“Did you do anything else? Hire private services?”
“We spent a lot of money,” I said, attempting not to grind my teeth or to re-explain yet again why secondary medical assistance was not an option prior to the age of 18. “I worked part time instead of full time so that someone would always be available.”
Even though it was a phone call, the silence was worth a thousand words. Finally, the social worker on the other end of the line said, “Well, you’ll be eligible for respite care.”
Respite care. Respite. Care.
At the end of the phone call, my partner and I both burst into tears. The idea of respite care hurt.
Respite. Care.
The idea still hurts.
Let’s talk about why.
For those who aren’t in the know, respite care is “a short break from the challenges and responsibilities of caregiving, offering parents or caregivers the opportunity to take time for themselves to rest, refresh, and recharge.”
While the worry isn’t ever completely gone– yes, your child might Do Something while you go rest at a hotel, or get away to do something your child can’t do– it’s the getting away that’s important. It’s the not being there, for the same reasons that we are encouraged not to eat lunch at our desks: creating physical distance to create mental distance. Creating mental distance so that we can play, refill our cups, remember that we are also people with needs and wants, joys and sorrows of our own, and rest, cry, laugh, and reconnect with each other.
Pre-pandemic, a Department of Human Services report from Texas, dated 9/2019, covering 2018 data (the most recent data that I could find), noted that 74% of parents of children and youth with special health care needs reported needing respite services to help care for their child.
14.5% responded that they needed respite but have never received it.
That’s 1/5th of those responding that they need respite services to help care for their child, or 20%.
Why don’t they have respite care? The survey asked that, too, and here were the top 3 reasons:
- No money to pay for respite (31.4%)
- Can’t find people who can provide respite(29.1%)
- Don’t trust others to provide my child with the care that they need (22.7%).
Other answers included not knowing about respite care and just not having any service or provider in town that could provide respite care.
Texas isn’t unique. In one large recent study, almost 25% of families nationally had unmet needs for respite care.
So what?
Why should we care?
In study after study, it has been shown that families with children with disabilities:
- Sacrifice earning potential, with one or both parents working part time instead of full time.
- Hesitate to change jobs due to the change in benefits or potential cessation of health care or PTO benefits for a period of time during a job change
- Rely on family members for “unofficial” respite services more often than official, or trained, respite providers
- Bear the burden of providing direct nursing services (often on overnight shifts), being the advocate for their child at all appointments, and in more than half of cases, being the care coordinator for their child with specialists and primary care physicians
- Identify unmet needs of their own, including sleep, time with their other children, time to communicate with a partner, or even time to eat or take a “bio break”
- Have more financial stressors due to out of pocket costs
- Report more symptoms of social isolation and depression
- Are four times more likely to be diagnosed with PTSD– and 40% have some symptoms of PTSD due to traumatic medical events
- Tend to report being ill more often than their same-aged peers with children who don’t have disabilities
One out of every 10 children has a disability.
If 20 to 25% of parents who have children with disabilities are suffering, why don’t parents’ own health care providers ask parents about respite care, about getting breaks built in?
Some do.
Health care providers, though, tend to ask about the things that they are able to envision for themselves. And our health care system? Our health care system is a child with a disability, on a ventilator, seeing 13 specialists in 4 different towns. Health care providers, like your physician? We are the parents, with unmet needs: sleep, nutrition, communication.
So as a parent, what can we do, when respite seems so far out of reach?
What we do best.
We advocate.
We communicate with our own care providers.
We go in ready to be honest about what’s going on: the drug that costs 17,000 a year, the wait to get on medical assistance, the missed mortgage payment this month, the feelings of isolation and the flashbacks to a medical procedure that didn’t go well for our child. The lack of sleep due to not having enough home health nurses to staff all the hours. The inability to get it all done.
We ask for help, because any sort of help-seeking behavior is good.
We remember, that in some ways, the health care providers are “parents” too. And we ask again, if that’s what it takes, until we get the help we need.
Because help-seeking behavior and advocacy let us lift each other up, and maybe by providing an example to the other “parent” in the room, we can help change healthcare as a whole.
(Wondering what ‘frogging’ is? When you’re unravelling knitting really fast, you’re ripping it out. Rippit… rippit… frogging. Get it? For more bad jokes, support, or question answering about what it is a life coach does and how to pick up a dropped stitch, schedule a 30 minute chat with me today.)
