Why I Am Looking for a New Home for My 19-Year-Old Daughter

Tonton is now 19.

The truth is, I still want us to live together for a long, long time.

That is how I feel as her father.

Because of our family circumstances, I chose to live with Tonton, just the two of us, and to take on her day-to-day care on my own.

On weekdays, Tonton attends a daytime support service for people with disabilities in Japan. I am a company employee. When we first began living together, I used paid leave and reduced working hours to try to balance my job with caring for her.

But I used up my paid leave, and that arrangement was no longer sustainable. I reached my limit and took a leave of absence from work.

My wish to keep living with Tonton has not changed. At the same time, the reality is that I could no longer sustain our daily life without stepping away from work.

That is why, now that Tonton is 19, I have had to begin seriously considering a group home—a shared home with support for people with disabilities.

I am seeking advice while holding both of these things in my heart: the wish to stay together, and the need to find a home that makes our life sustainable.

Gradually Returning to Work with Support at Home

Finding a group home takes time. So our plan is to begin using in-home disability support, gradually return to work, and eventually work toward a move to a group home.

Support workers have now begun visiting our home.

A Home Where She Can Keep Enjoying What She Loves

I want to find a place where Tonton can receive the support she needs, enjoy the things she loves, and feel safe.

To that end, I am exploring how group-home staff, support workers, visiting nurses, her doctor, a disability support coordinator, and the local ward office’s caseworker can work together. I also think it is important for her to become familiar with the place and the people gradually, through visits and trial stays.

We have not yet decided on a home or a support arrangement. There is still a great deal to check.

What I Hope to Share

In future posts, I hope to write about Tonton’s earlier years and our life since it became just the two of us.

I also plan to share what we have experienced and the barriers we have encountered while looking into support and seeking advice. In Japan, this includes assessments of disability support needs, brief care and overnight respite services, visiting nursing, support for getting out and about, intensive home support, other in-home services, and group homes.

I would also like to write about applying for Japan’s disability pension and moving from the medical-expense subsidy system for children with specified chronic illnesses to the system for designated intractable diseases.

Since Tonton graduated from a special needs school at 18, disability services and paperwork associated with the transition to adulthood have come at us in a rush. This blog will be my personal record of what I have researched, the advice I have sought, what has worked, and what has been difficult.

I hope our efforts to find a way forward for Tonton’s life may offer something useful to other families looking for a home for someone they love.