障害児保育園ヘレンに、野田聖子議員を始めとする超党派の議員の方々が視察に

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 冷たい雨が降る11月25日、杉並区の障害児保育園ヘレンに、著名な衆参院議員と文科・厚労省の官僚の方々14人が視察に来られました。
 議員の皆さんの顔ぶれは、自民党は野田聖子元総務会長、宮川典子議員、木村弥生 議員。
公明党は山本博司議員、民主党は細野豪志政調会長と荒井聰元国家戦略相という、与野党が混在する、ここで国会が開けてしまいそうな顔ぶれ。
 しかし、彼らは論戦するのではなく、障害のある子ども達と笑顔で触れ合い、その後官僚の方々と、どうやったらこの子達を、そして家族をもっと支えられるだろうか、をひざ詰めで議論したのでした。
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 というのも、そこにいた障害児たちの多くは医療的ケア児。鼻からチューブで栄養を摂っていたり、気管を切開していたりする子ども達で、この子達を巡る環境は、大いに立ち遅れているためです。
 昔であれば出産とともに多くの命が失われていました。しかし今では新生児医療の発達によって、出産時に例え700グラムであっても、医療デバイスの支えによって助かるようになってきました。日本は世界で一番、出産時に子どもが助かる国になったのです。
 しかしこうした輝かしい医学の成果の一方で、医療的ケア児たちの退院後の行き先はありません。保育園にも幼稚園も、医療的ケアは通常業務の範囲を逸脱してしまうので、預かれない。
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 障害児の通所施設でも、ケアにマンツーマンに近い手間がかかるにも関わらず、国からの補助単価はそれ以外の一般障害児と同じレベルで、重度障害児扱いはされず、コスト的に対応できません。なぜこんな風になってしまうかというと、障害判定基準に43年前のものが使われていてアップデートされていないのです。
 障害児保育園ヘレンは、どこにも行き先のない医療的ケア児も長時間お預かりができる、日本で唯一に近い施設ですが、どうやってこうした仕組みが「当たり前のもの」になるか。それを名だたる議員や官僚の皆さんが、忙しい中、現場まできて必死に議論をしたのです。
 ふと、皆さんは不思議な思いになりませんか。与党と野党はお互いに立場も考え方も全然違って、批判しあうのが仕事だ。なんとなくテレビを見ていると、そんな印象を受けてしまうかもしれません。
 しかし、実際はそうではないのです。
お子さんが医療的ケア児で、実際にどこにも預けることができない絶望を味わった野田聖子議員。
お子さんを生後すぐに亡くされた細野議員。
障害のある娘さんを育ててこられた山本博司議員。
教師として特別支援教育に携わった宮川議員や看護師だった木村弥生議員。
 ご自身の体験に基づき、なんとかしたい、なんとかしないと、という思いを持たれたのでした。
思想の左右、与党か野党か、の違いはありましょう。しかし、何とかしたいという心の芯からの思いに比し、それらは決定的な差異ではないのです。
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 そして来年の通常国会において障害者自立支援法の改正案が提出される際に、医療的ケア児の支援について何とか盛り込もうと、与野党を超えて議員の皆さんが、省庁を超えて官僚の皆さんがご尽力してくださっています。
 これまで何の注目もされず、24時間365日家で孤立していた、医療的ケア児の親子の環境が変わるかもしれません。
 だとしたら本当に大事なことというのは、イデオロギーに関係なく、志を同じくする人たちが、世間の注目も受けずにひっそりと、しかし確信を持って変えていくんだな、と。そんなふうに思いました。
 そしてこれからも現場で汗をかきながら、制度側にいる彼らと志を共にしていきたいと思います。
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