I want to live longer than my child for only one day May 20th, 18:03

Children die before parents.

No parent wants it.

However, I learned that there are parents in Japan who have no choice but to wish, "I want to live longer than my child in one day."

What will happen to my child if I fall down?

Parents are worried because they can't find a place to go.

(Social Department reporter Zhou Yinghui)

45 years of long-term care for my daughter

In March of this year, I met a parent and child.

Saeko Matsue (73), who lives in Yao City, Osaka.

I live with her daughter Tomomi (45).

Her Tomomi has a severe intellectual disability as well as her legs.

She can't talk and she has to read her emotions with facial expressions and gestures.

Matsue has been caring for her daughter for 45 years, using her day services and more.

Since she lost her husband five years ago, she has taken on that role alone.

Tomomi, who is indispensable for support in all aspects of daily life.

At the time of meals, rice is brought to the mouth, or side dishes are cut into pieces that are easy to eat, and they are stabbed one by one with a fork and handed over.

Even if she gets burned, she can't tell in words, so Matsue always checks the temperature with her tongue before eating the cut side dishes.

It is difficult for her to walk on her own, and she needs assistance in bathing and changing clothes, but depending on Tomomi's physical condition and mood, she may be refused, and her bedtime often goes past 2:00 am.

She is surprised that she continues this life as she walks with her daughter, who is bigger than herself, but she feels that Matsue has suffered so far. She asserts that she never had.

Mr. Matsue

"It may seem difficult for people around you, but I take it for granted because I live with a child with a disability. Certainly it can be difficult, but I will continue because I am my child. Was done "

Tomomi was diagnosed with epilepsy when she was about three months old and had an unexplained inferior attraction and visited a hospital.

Her doctor told her that her disability could remain, depending on the frequency of her seizures.

She said Tomomi, then she didn't speak when she grew up.

She said, "Why did only my child end up like this?"

"I want you to say" mother "in one word."

Matsue was worried every day.

When she saw her child playing cheerfully outside, she was sick and she sometimes thought, "I wish it was raining every day."

However, at the facility she started attending when Tomomi was three years old, she met a child with the same disability and her parents, and her feelings changed.

As she shares her experiences and worries and encourages each other, she becomes more positive about raising her child, and she is determined to "I will support this child even if she has a disability". It is said that it became.

A photo of Tomomi when she was 6 years old, which is said to be Matsue's "most favorite".

She wears a floral dress and smiles like a funny smile.

When she went on a trip with her family, Tomomi said she was smiling when she saw her family spending time happily.

Mr. Matsue

"I can't talk, but Tomomi laughs with a cute face when she's happy, and when she doesn't like it, she makes a disgusting face. I don't know if it's a personality, but she has a lot of facial expressions. As a parent, I want to see the smile of such a daughter all the time. "

After that, my feelings for my daughter motivated Mr. Matsue.

Tomomi, who had frequent epileptic seizures.

When she heard that she had a detailed doctor, she continued to go to the hospital by driving a 100-kilometer round trip.

When the operation of the workshop where Tomomi used to go became difficult, she went around the area and collected donations.

Mr. Matsue has been doing her best to make her happy regardless of her disability.

Her life was always with Tomomi-san.

Physical strength is at the limit ...

But that situation is changing dramatically.

When Matsue turned 70, she suddenly suffered severe pain in her legs and couldn't walk.

She had a stress fracture in her right knee.

She hasn't healed after three years, and she still goes to the hospital regularly and she's getting painkiller injections.

She also said she suffered from back pain and her daily medications were essential due to high blood pressure and so on.

She recently said she began to feel her weakness rapidly.

She can no longer hold up Tomomi who is sitting, and contrary to her feelings, she thinks she can no longer continue to live as usual.

She is a daughter who cannot live without assistance.

While she wants to live with her all the time, Matsue decides to find a place where Tomomi can live with peace of mind about three years ago because of her anxiety about her future.

There is no place for my child

Mr. Matsue thought that it would be desirable to have an institution where he could receive generous care because he had epilepsy in addition to severe disabilities.

When I searched for her home in Yao City and the surrounding municipalities, I found 5 places.

However, although she has visited many times and made inquiries by phone, she says that there is no room at all.

Tomomi has the highest "disability support category", which indicates the degree of support required, as "category 6."

She also has a 73-year-old mother who cares for her.

What does it mean that even Tomomi-san can't enter the facility?

Last month, Mr. Matsue also called the entrance facility, which is about 30 minutes by car from his home.

Matsue: I'm sorry, I have something to ask you.

My daughter is a severely disabled person, but I'm really thinking about a place to live, and I'd like to get in if possible.

Even if you ask now, you can't do it right away, right?

Facility person in charge: That's right.

Excuse me, but which city do you live in?

Matsue: It's Yao City.

How many people are currently waiting for admission?

Person in charge: There are about 40 people.

Matsue: That's right ...

How long does it take to get in?

Person in charge: That's right.

The capacity of the facility is 50 people, but now 50 people are living and it will be in the form of vacancy.

It's difficult for us to tell when that will happen.

I'm sorry I couldn't help you.

Forty people were already waiting in the packed facility.

It is said that all the facilities around the house are in the same situation, and even if there is a vacancy, it is not possible to enter immediately unless it is a "highly urgent" case such as the death of a parent.

Mr. Matsue never imagined that this would happen.

Will she really own herself until her daughter's "land of peace" is found?

Every day she is soliciting uncertain anxieties.

Mr. Matsue

"If possible, I would like to keep my daughter living in the area where I was born and raised. But all the facilities are full. It's too sad that there is no place to live. I'm like this now. I can talk and walk and prepare meals myself, but considering my age, I don't know what will happen tomorrow. Recently, every night I wondered what would happen to this child if I fell down. I'm really stepping on it now, it's really. I have to step on it. The more I think about it, the more anxious it is, but now the reality is that I have to wait for the facility to become available. "

Waiters for admission facilities nationwide

Even a family like Mr. Matsue has nowhere to go.

What is happening in the field of welfare for persons with disabilities now?

I decided to check the situation all over the country at once.

First, I asked the Ministry of Health, Labor and Welfare how many people with disabilities were waiting to enter the facility.

Then, the country has not conducted a survey and does not know the number of people.

I was skeptical about it, but I couldn't wait for the investigation, so I interviewed the departments in charge of all prefectures and took about two months to independently summarize the number of people waiting.

The result was as follows.

▽ Number of people waiting at the entrance facility at least 18,640

(as of 2021, the total of 27 prefectures whose number is known)

▽ Breakdown of 27 prefectures * Survey dates differ by municipality

(16 summarized by total number of people) Prefecture)

1 Hiroshima 1664

2 Okayama 115 2

3 Kagoshima 1137

4 Yamaguchi 872

5 Kumamoto 764

6 Miyagi 626

7 Tottori 588

8 Oita 469

9 Mie 466

10 Niigata 413

11 Nagasaki 371

12 Hyogo 332

13 Shimane 331

14 Fukui 176

15 Wakayama 106

16 Kagawa 69

(11 prefectures summarized by actual number of people)

1 Saitama 1594

2 Tokyo 1430

3 Shizuoka 1200

4 Osaka 1064

5 Ehime 1050

6 Ibaraki 888 People

7 Gunma 524 people

8 Chiba 482 people

9 Nagasaki 309 people

10 Tokushima 294 people

11 Saga 269 people

* Osaka surveys about half of the facilities in the

prefecture * Gifu prefecture aggregates every three years, Kochi prefecture aggregates only in 2019

No data for 2021

After all, there were a lot of waiting people all over the country.

According to prefectures that know the number of people, it is mainly people with severe intellectual disabilities who want to enter the facility.

Of these, in 13 prefectures such as Tokyo, Saitama, Hiroshima, and Miyagi, the number of people waiting has tended to increase year by year, and in some prefectures, the number of people with intellectual disabilities has doubled in the last 10 years.

On the other hand, 20 prefectures do not know the number of waiting people, so the actual situation seems to be even higher.

Why are there so many people waiting at the facility?

Organizations and experts created by parents of people with disabilities point out that the background is the spread of so-called "elderly care" in which elderly parents like Mr. Matsue care for children with disabilities.

One of the supporting data is the population of people with disabilities.

It is said that the life expectancy of persons with disabilities is increasing due to advances in medical care.

Under these circumstances, according to a national survey, the population of people with intellectual disabilities who are 40 years old or older at home has increased more than five times from 75,000 in 2000 to 382,000 in 2016 (both are estimated).

In a 2016 national survey, 74% of people with intellectual disabilities under the age of 65 at home lived with their parents.

Although there is no data showing the number of households with "elderly care", the number of households with "elderly care" is gradually increasing based on the results of these surveys, and there are a number of cases in which people wish to enter the facility due to anxiety about the future. It is said that it is considered.

A serious situation is spreading where the country does not know.

I felt that I needed to cover the background further.

Admission facility in Saitama Prefecture "161 people in 2 vacant spaces"

The next place I visited was an entrance facility where people with severe intellectual disabilities live.

"Taiyo no Sato", a facility to support people with disabilities in Shiraoka City, Saitama Prefecture.

It accepts about 60 people from all over the prefecture.

Approximately 20 staff members, including two nurses, are working here during the day, and six people are stationed at night to take care of residents 24 hours a day.

In the case of people with severe intellectual disabilities, there are many people who reach the end of their lives at the facility, so there is almost no vacancy in the capacity.

Here too, the number of people who wanted to enter and waited was gradually increasing.

Mr. Yasuyoshi Sonobe, the director of the facility, showed me a document that summarizes the number of people waiting, which arrives from the prefecture every three months.

As of February this year, there were 161 people, nearly three times the capacity.

On the other hand, there were only two people available at that time.

Most people couldn't accept it.

Furthermore, Mr. Sonobe is concerned about the existence of "potential waiters."

Parents of people with disabilities, including those outside the prefecture, call the facility every week to request admission.

Recently, it seems that the number of inquiries from parents in their 70s and 80s is the highest.

In the case of Saitama Prefecture, it is necessary to apply at the municipal office to request admission and wait, but parents who make direct inquiries often have not yet applied.

According to the summary of Saitama Prefecture, the total number of people waiting in the prefecture is 1594.

However, Mr. Sonobe thinks that the number of people will increase further if these people are included.

Some calls to the facility are highly urgent.

Last fall, a mother in her 80s said she was caring for her son.

She said, "I don't know when she will be accepted," she said, and her mother looked exhausted and she said, "I want to finish it."

She determined that in the worst case she could be life-threatening at the facility, but she was full and unacceptable.

For this reason, she contacted the local government in the prefecture where her parents and children live, and immediately sent the people involved in the facility to their homes to check the situation of her mother.

Her mother's son was later given disability welfare services in the prefecture.

Due to these daily situations, the facility side also thinks that the number of cases where elderly parents reach the limit in "elderly care" is increasing.

Sonobe Facility Manager

"I feel that the number of consultations from elderly parents has really increased in the last few years. In many cases, it is necessary to accept it immediately considering the age, etc. I want. Some of the consultations I receive are more fierce and tighter than the people living here. However, as long as the number of people is fixed, I can't give it up. I'm sorry about that. I'm full of feelings

Why doesn't the number of admission facilities increase?

入所したくてもできない障害者と、受け入れたくても空きがない施設。

こうした“ミスマッチ”はなぜ生じているのか。

取材を進めると、入所施設は増えるどころか、むしろ減る傾向にあることが分かった。

その背景にあるのが、2005年に成立した障害者自立支援法（現・障害者総合支援法）に基づく国の基本指針だ。

この中で国は、障害者が障害のない人と同じように、それぞれが望む地域で暮らせるようにすべきだとしている。

施設に限らず、多様な暮らし方ができる社会にしていこうという考え方だ。

この指針の下、国は施設の入所者数を段階的に減らすとして、3年ごとに具体的な数値目標を示している。

その結果、全国の入所者はあわせて12万人余り（2021年3月時点）と、5年前に比べておよそ4500人減少した。

その施設に代わって、地域で中心的な役割を果たしているのがグループホームだ。

グループホームは、一般の住宅やアパートなどを活用し、障害者が数人で共同生活を送る。

入所施設と異なり看護師などの配置は義務づけられておらず、それぞれが自宅に近い環境で過ごしている。

全国の入居者はあわせて14万人余りと、5年前に比べておよそ4万1000人増加した。

施設の入所者が減っているとはいえ、グループホームの入居者とあわせて考えると、受け入れ人数は5年間で3万人以上増えた計算になる。

一見、施設の待機者が相次ぐ現状とは矛盾しているようにも思えるが、それには理由があった。

厚生労働省によると、グループホームは障害が比較的軽い人を対象とするケースが多い。

実際、全国の入居者のうち、必要とされる支援の度合いが最も高い「区分6」の人は1割にも満たないという。

また、去年、全国の自治体を対象に行われた調査では、回答があった997の市区町村のうち、43％が「重度の知的障害者向けのグループホームが特に不足している」と答えている。

待機者の多くを占めるとみられる重度の障害者にとって、グループホームは必ずしも入所施設に代わる「受け皿」にはなっていないのが現状だ。

「スタッフの7割が高齢者」グループホームの課題

その背景には、グループホームが抱える運営上の課題があった。

埼玉県日高市の社会福祉法人「日和田会」。

中古の住宅を活用し、県内であわせて19のグループホームを運営している。

1軒あたりの入居者は3人から4人ほど。

日中は就労支援の事業所などに通いながら、スタッフの介助を受けて暮らしている。

この法人では重度の障害者を積極的に受け入れていて、入居者の半数近くに上る。

このため、室内のバリアフリー化やスプリンクラーの設置などが必要で、1軒あたり1500万円ほどの費用がかかるそうだ。

さらに、介助には多くの人手が必要となる。

しかし、国からの障害福祉サービスの報酬には上限があり、それを超えてスタッフを増やそうとすると、人件費は自己負担になってしまうという。

月5万円の利用料を合わせても運営は厳しく、スタッフの時給は、県の最低賃金に近い1000円前後。

求人を出しても応募はなかなかない。

現在は、およそ100人いるスタッフの7割が高齢者で、ぎりぎりの状態でシフトをまわしている。

取材に訪れた日も、日高市のグループホームでは72歳の女性が1人で夜勤を担当し、寝つけない入居者の話し相手になったり、朝食を食べさせたりしていた。

高齢のスタッフにとっては負担が大きいため、急に体調を崩したり辞めたりすることもあり、昨年度は12人を新たに雇った一方、10人が辞めたそうだ。

それでも入居を希望する障害者を受け入れたいと、去年12月には定員が7人のグループホームを新たに開設したが、スタッフが急に辞めてしまい、今も予定していた人数を受け入れられずにいる。

萩原 理事長
「高齢のスタッフに支えられてなんとか運営していますが、重度の障害がある人が暮らす場合、生活の質を確保するには多くの費用がかかります。それが国の報酬に反映されないかぎり、運営は厳しく、必要な人材も集まりません。事業所の頑張りだけでは対応できない状況になってきていると思います。入所施設の空きを待つ人がいる中、私たちのグループホームでできるかぎり受け入れたいと思っていますが、実際には難しいのが現状です」

専門家「国は多様な選択肢を」

入所施設にもグループホームにも入れず、行き場をなくした障害者たち。

「施設から地域へ」という国の方針と重度の障害者をめぐる現状との間には大きなギャップがあることが、今回の取材で明らかになった。

施設の待機者が少なくとも延べ1万8000人余りに上っている現状について、障害者の政策に詳しい早稲田大学の岡部耕典教授は次のように話している。

早稲田大学 岡部耕典教授
「親が自身の健康不安や将来への不安から子どもを入所させたいというケースが増えていると考えられるが、積極的に望んでいるとは限らず、地域の受け皿が少ないため施設を選択している人も多いのではないか。この受け皿が足りない現状が、『老障介護』をさらに深刻化させている。国はまず待機者の現状をしっかりと把握したうえで、重度の障害者を受け入れるグループホームについてはスタッフを十分に配置できるよう財源を確保するなど、対策をとる必要がある」

さらに教授は、待機者を減らし、本当の意味で施設から地域への移行を進めるには、グループホームだけでは十分とは言えないと指摘する。

"For example, in Europe and the United States, there is active support called" personal assistance "in which people with severe disabilities conclude contracts with helpers themselves and live alone with 24-hour assistance. We should provide a variety of options in the community, not just the ones, so that each person can achieve the desired life regardless of the degree of disability. "

Postscript of the interview

"I want to live longer because I want to live longer than my child in one day."

The words at the beginning were leaked by the parents of many disabled people I met during the interview.

I don't have to worry about the fate of my child, and the intimacy is strongly expressed.

Saeko Matsue (73) from Osaka, who responded to the interview this time, said, "I'm happy if I can live with peace of mind even if I'm away from my parents and I can laugh several times a day." rice field.

Through interviews, she felt that she wanted a society in which such small wishes could be fulfilled as a matter of course.

What will happen to the lives of people with severe disabilities and their families in the future?

I would like to continue listening to the earnest voices of the field.

Tokyo Metropolitan Police Department club reporter

Zhou Yinghui

joined in 2017.

He has been in the current affiliation since 2021 after working at the Okayama station.

He has covered a wide range of survivors and ex-patients with leprosy.