山が動いた!医療的ケア児の支援強化で法改正へ

今日はある分野において、歴史が動いたということを、感謝とともに報告します。
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 昨日12月14日、以下のNHKニュースがありました。
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●医療的ケア必要な子どもへの支援強化で法改正へ
たんの吸引など医療的なケアが必要な子どもが増えるなか、厚生労働省は必要な法律を改正し、こうした子どもや家族への支援を強化する方針を決めました。
14日は厚生労働省の専門家会議が開かれ、障害者を支援する法律の見直し案がまとまりました。
この中では、たんの吸引など日常的に医療的なケアが必要な「医療的ケア児」が増えていることから、子どもたちが福祉サービスを利用しやすくなるよう新たな仕組みを作るべきだとしています。
また、必要な支援につなげるため相談窓口を充実させることや、「医療的ケア児」に対応できる専門の医師や看護師などの人材の育成も進めるとしています。
文部科学省によりますと、全国の小中学校、それに特別支援学校で、医療的ケアを必要としている子どもは昨年度は8750人で、この8年間でおよそ3000人増加しています。
背景には高齢出産の増加や、医療技術の進歩で命を救える子どもが増えていることがあると指摘されていますが、医療的ケア児を支えるための福祉サービスは少なく、家族に重い負担がのしかかっているのが現状です。
厚生労働省は専門家会議の議論を踏まえ、必要な法律の改正案を来年の通常国会に提出することにしています。
 リンクでは動画もあり、そこでは「医療的ケア児」という子達が、どういった子達なのか、ということが短く非常に分かりやすく描かれているのですが、鼻にチューブを入れていたり、呼吸器をつけていたりする新しいタイプの障害児「医療的ケア児」たちは、これまで制度と制度の狭間に追いやられていました。
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 保育園でも幼稚園でも預かれない。通所施設は数時間しか使えず、ヘルパーもたくさん使えるわけではない。そんな状況で、親(特に母親)は社会的に孤立し、24時間365日の看護に疲労困憊しきっています。(世田谷区では9割の親が、睡眠は6時間以下で分断睡眠だったと言います)
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 そんな状況を何とかしようと、フローレンスでは2014年9月に、医療的ケア児を長時間お預かりできる日本初の施設、障害児保育園ヘレンを開園しました。
 また、社会福祉法人むそう、NPO法人ソーシャルディベロップメントジャパンさんのような医療的ケア児を受け入れていた数少ない先駆的な団体さん達と共に、フローレンスは「全国医療的ケア児者支援協議会(医ケア協)」を立ち上げました。
 医ケア協でフォーラムを開催し、政治家や官僚の方をお呼びしたり、ヘレンに民主党の元国家戦略大臣であった荒井聰議員が視察に来てくれたりしていくうちに、政治側が色々と動いてくださるようになりました。
 荒井議員が音頭を取り、「永田町みらい会議」という超党派の国会議員、厚労省・文科省が一堂に顔を揃えて議論する場ができたのです。そこでは、野田聖子議員、細野豪志議員、山本博司議員などの実力派議員の皆さんが立場を超えて対話を始めてくださいました。
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 そこで何度も議論が行われ、この医療的ケア児を、何とか既存の法律を改正し、しっかりと制度の中に包摂できまいか、検討されたのでした。
 また、「政党の差って、なんだろうか」という記事でもお伝えしたように、超党派+官僚の皆さんでヘレンの現場に視察にも来てくださり、やっぱりこういう子ども達の支援が必要だ、ということで更に頑張って動き回って下さったのでした。
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 その結果が、今回のニュースです。
障害者総合支援法を改正していこうじゃないか、という方針が専門家会議で決められたのです。
 大島分類という43年前に作られたルールを使い続け、そこから弾かれる医療的ケア児が何らの支援も受けられずに制度の隙間に落ちていく現状に、光が射し始めたのです。
 まさに歴史が動いた瞬間と言って良いでしょう。
 これから更に、厚労省の津曲室長を中心とした中堅若手官僚の方々が汗をかき、改正法案を書き上げ、それを国会に提出して通過させていくことになります。法案が通るまで、どうなるかはまだ分かりませんが、現状を打開するために、大きな一歩が踏み出されたことは間違いがないでしょう。
 党を超えて手を繋いで下さった国会議員の皆さん、厚労省・文科省の中堅・若手官僚の皆さん。そして医ケア協議会を創ってくれた社会福祉法人むそうの戸枝代表、ソーシャルディベロップメントジャパンの矢部代表、ヘレンの現場のみんな。泣きながらのスピーチで、フォーラムにおいて政治家の皆さんの心に火をつけた、他ならぬ医療的ケア児の保護者の皆さんのお陰で、制度が音をたてて変わろうとしています。
 そんな「みんな」に、心からの感謝を。

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