The Reasons for Respite

Our family is going through a tough transition right now. My niece Hannah, who has been our primary respite provider and Natalie’s summer tutor for the last few years, is moving out of state in a few weeks. We’re happy for Hannah, and her husband, Adam, as they take this next exciting step in their lives as young marrieds. But that happiness is tempered by some serious grief over losing such a vital part of our family’s support system.

This occurrence has reminded me of how grateful I am for having respite services. In our case, a Children's Mental Health Waiver pays for the service with Medicaid dollars. (We paid privately for the highly skilled tutoring Hannah, a certified teacher, provided.)

In case you aren’t familiar with the concept of respite, I’ll explain. A trusted adult provides child care for a period of time — ranging from a couple of hours to a maximum of 72 hours straight, in our case — to give the primary caretakers a break, while at the same time giving the child quality 1:1 time (and a break from his/her tired, crabby parents). The intent is to keep intensely needy, behaviorally challenging children living at home, and to avoid psychiatric hospitalizations.

In Iowa, each family’s monthly dollar allotment of Children’s Mental Health Waiver funds is divided between several services: in-home therapy, home and community skill building, and adaptive equipment. (In the case of a child with ADHD who needs constant supervision to stay safe, an alarm for the child’s bedroom door or doors leading outside of the house is an example of assistive technology the waiver covers.)

Through my highly-opinionated persistence, our family has been allowed a rare exception, and is directing our full monthly allotment of funds to respite services. After trying in-home services, I found that we really needed the assistance of a more highly educated level of professional, with the ability to diagnose and provide ongoing professional level evaluation, and began seeing an experienced, skilled PhD psychologist for therapy. With that need met elsewhere, I pleaded for more of the service I knew helped our family the most: respite.

I was fascinated to find my instincts about how important respite services are for our family validated to some degree by a recent study. Researchers reviewed the records for over 28,000 kids and young adults (ages 5-21) with autism who were enrolled in Medicaid in 2004, and evaluated how effective various Medicaid funded services were in preventing hospitalization. Although the population studied is individuals with autism, rather than ADHD, I’ve found the struggles of parents of kids with autism and ADHD (and other special needs) are much the same. The study results, quoted here in an article from disabilityscoop.com, surprised researchers.

"For every $1,000 states spent on respite services in the previous 60 days, researchers at the University of Pennsylvania found an 8 percent drop in the odds of hospitalization.

Meanwhile, the level of therapeutic services — including speech, occupational, behavioral and other therapies — provided to an individual with autism did not impact the likelihood that they would end up in a psychiatric hospital."

The article on disabilityscoop.com goes on to say:

"Mandell and his colleagues said they found it ‘puzzling’ that therapeutic services did not also mitigate the odds of hospitalization.

'The lack of association between therapeutic services and hospitalization raises concerns regarding the effectiveness of these services,’ they wrote."

I disagree. I think therapeutic services can be reasonably effective in helping the individual, but do little to decrease caregiver stress, at least in the short-term, and that caregiver stress strongly impacts the decision to hospitalize a child. In fact, therapies provided to our kids often add to caregiver stress, by adding extra appointments to keep, and creating plans that parents shoulder the responsibility for implementing at home. Respite is the only service that benefits the whole family directly and provides immediate relief to exhausted, overwhelmed parents. The concern this study raises for me is the degree to which policy makers, funders — and maybe even researchers — fail to recognize the importance of taking a whole family approach to services.

I hope that a recommendation coming out this study will have far-reaching, positive implications for families like ours. The disabilityscoop.com article says: “Currently, respite care is not offered to Medicaid recipients in every state, something that the study authors say ought to be reconsidered given the positive results shown in their research.”

How very true.

The availability of respite and other in-home services for kids with ADHD and/or other mental health conditions, and the guidelines for who qualifies to receive the services (in terms of financial situation, diagnosis, and severity of impairment) varies from state to state.

I’m pretty sure I’m the only one of my online "mental health mama" friends who is provided with this life-changing service through the State, and how long we’ll keep receiving it is anybody’s guess. Iowa policy-setters tried unsuccessfully to get lawmakers to implement a scary-low limit on respite hours for those on Waivers just last year, so don’t move to Iowa just yet! Conversely, some Minnesota moms whom I met at a conference a few years ago have 20 hours of in-home help per week, to help manage life with their adopted children with fetal alcohol spectrum disorders (FASD); a different condition, yes, but an example of how much services differ from state to state.

Here’s a recent real-life example of the power of respite to keep kids at home, and out of hospitals or residential placement. A mom-friend of mine who lives in North Carolina has a young son with FASD, which is considered a developmental disability, as well as several mental health diagnoses. His behavior is extremely challenging, nearly all the time. He attends a private school for kids with special needs, for which his parents pay steep tuition. This middle-income family doesn’t qualify for any state (or county) funded services.

Recently, my friend’s son’s teachers recommended he transfer to a residential school. There would be no cost to his family for him to attend this school.

His parents are struggling mightily with this decision. Although the teachers’ recommendation is based purely on what would be best for their son, there are two “side-effects” that following their recommendations would yield: it would relieve a financial burden, and it would give them a much needed break. On the other hand, he’s nine years old, they’ve been working hard to form a strong, healthy attachment with him since adopting him, and, besides, they love him to pieces and would miss him. My friend is angry. It isn’t fair that money and a lack of services (which are available to kids with other disabilities, in other locales, or with slightly lower incomes) will factor into this decision.

My friend and I were discussing one of the “side-effect” considerations; the appeal of having a break from such intense parenting. My friend said, “The thing is, having 6 hours of respite a week would accomplish the same thing [as a residential placement].”

The fact that having respite is not an option (they can’t pay for it privately while also paying tuition and medical expenses) is beyond sad. It’s just plain wrong.

I’m so, so thankful for the respite services our family receives. And for all of my fellow exhausted, overwhelmed parents -- who love their special kids to the moon and back, and would do anything in their power to help them -- I wish you the help you need and deserve.

May you, too, be blessed with respite.