Before Support at Home Began: Finding Our Way Through Three Options

In an earlier post, I wrote that we had begun using in-home disability support, with a plan for me to gradually return to work while looking for a group home for Tonton.

This time, I want to record how we arrived at that plan.

My job involves frequent business trips.

I felt that returning to work without restrictions would require either a place in a group home or arrangements for someone to watch over Tonton at home, 24 hours a day, every day of the year.

My first hope was for her to keep living at home.

Our First Choice: Staying in Her Own Home

The service I hoped we might be able to use was Japan’s intensive home-visit care program for people with severe disabilities, known as judo homon kaigo.

It would mean less change in Tonton’s surroundings and allow her to stay in the home she knew. That was why it was my first choice.

But the caseworker in our local government’s disability welfare section explained that Tonton was not eligible because her current score on the behavior-related assessment items was 3.

Our disability support coordinator’s assessment was also:

“Three is certainly too low, but I don’t think she would reach ten.”

Ten was the score we were told at the time that Tonton would need in order to access this service.

As her parent, I wondered whether there was some way to make it possible. I sought advice from various people and considered requesting a reassessment.

At first, I felt ready to fight the authorities if that was what it took.

But these were also the people I would need to keep consulting about her support for years to come. I worried that the way I pursued the issue might make my relationship with the caseworker more difficult.

It was not that our relationship had actually deteriorated. Still, after thinking it over from different angles, I decided to stop pursuing this service.

It had been the option I most wanted to use so that she could remain at home. Now I had to consider another path.

A Group Home Was Not Easy to Find Either

Our second option was a group home—a shared home with support for people with disabilities.

At that point, however, Tonton had experienced only one short-term overnight respite stay.

And none of the nearby homes that seemed potentially able to support her with Dravet syndrome had a vacancy.

A place that could provide the support she needed. Somewhere she could gradually get used to the people and surroundings. And an available place.

It did not look as though we would find all of that easily.

Our Third Path: Bringing Support into Our Home

So we chose to make as much use as possible of visiting support workers through Japan’s in-home disability care service, known as kyotaku kaigo.

Even if I could not return to work fully, I would start by returning with restrictions. We would keep living that way while continuing our search for a group home.

That became our third option.

From discussing this plan with our disability support coordinator to finding support workers and reaching the first day of support, it took about two months.

We are starting with two visits a week, with a plan to increase to five days a week at a pace that allows Tonton to get used to it.

Having support begin does not mean that everything falls into place straight away. But we have taken a first step toward getting help with life at home.

Doing What We Can, One Step at a Time

Throughout this time, we have also continued looking for a group home.

We have been taking the steps available to us, including trial respite stays at places where openings happened to come up—one about a 30-minute drive away, and another about two hours away.

What on earth will happen from here?

Sometimes I think I have not felt this uncertain about the future since the period I spent studying to retake my university entrance exams.

This time, though, there are things that my own efforts alone cannot change. At times, that leaves me feeling helpless.

Even so, I want to do whatever I can.

After the trial stays, I wrote letters to the group homes that had welcomed Tonton, to thank them.

Is there anything else I can do?

That is a question I keep asking myself as I work through what is in front of us, one step at a time.

This post records the explanations our family received and our experiences at the time. Eligibility for services such as intensive home-visit care is not determined universally by the scores described here alone. These are Japanese support services; please check eligibility and procedures with your local government or support coordinator.