全ての子どもたちが活き活きと過ごせる社会を目指して

この度フローレンスは、社会福祉法人むそう、NPO法人ソーシャルデベロップジャパンとともに
医療的ケア児の問題を解決するために「全国医療的ケア児者支援協議会」を発足しました。
(参考1:医療的ケア児とは 参考2:医療的ケア児の抱える問題とは)

本協議会は、制度と制度の狭間に置かれている医療的ケア児(以下、医ケア児)や
その家族の声なき声を届ける、新たな仕組みとなることを目指しております。

その第一歩として、去る7月11日にキックオフシンポジウムを開催いたしました。
iryo-care_150711
150人以上の方にご来場いただき、医ケア児を取り巻く問題や現状を
参加者の皆さんと共有しながら、議論を進めました。

シンポジウムは社会福祉法人むそうの戸枝氏の挨拶に始まり、
弊会代表の駒崎が当協議会の設立についてのプレゼンを行った後、
医ケア児の親御さんにスピーチをしていただきました。

発表者の方が「シンポジウムで発表できることになった」と医ケア児の親が集まる会で伝えると、
全国の医ケア児の親御さんから、伝えてほしい声や想いが集まってきたそうです。
その全国の親御さんの想いを代弁してくださいました。
親御さんの言葉は重く、ニーズは切実でした。

「私たちは医療的ケアをするロボットではありません。どうか母親にならせてください。
医療的ケアがある子どもたちに光があたる国にしてください」

医ケア児やその家族を支える制度が、この国に不足していることを痛感させられると同時に、
医ケア児に光が当たる国にしていくためにあ歩み続けなければならないと認識させられた一言でした。
後半は自民党:野田聖子議員、公明党:高木美千代議員、民主党:荒井聰議員、
厚生労働省:津曲共和氏をお招きし、『制度の狭間で苦しむ医療的ケア児を政治はいかに救うのか』
テーマにパネルディスカッションを行いました。
医ケア児を支える制度づくりに向けた具体的なプロセスを共有することができたと同時に、
登壇者からは力強い言葉を聞くことができました。

「医ケア児は医療的ケアがある以前に子どもです。
彼らが子どもらしく人間らしく生きられるための仕組みを作る必要がある」(野田議員)
「どんどん声を発信してほしい。声が大きくなれば流れは必ず大きくなる」(高木議員)
「マスコミに医療的ケアの問題を訴えて、一人でも多くの人に知ってもらい共感を生み、
制度を後押ししてほしい」(荒井議員)
これらのご意見を受け、会場からは、
「具体的な問題解決に向けて希望を持つことができた」
「当事者である私たちが率先して声を上げていかなければならない」
という声が多くあがりました。
医ケア児やその家族 、また、医ケア児を支える事業者は多くの課題を抱えています。
彼らを支えるシステムがまだまだ充実していないという現状を、
今回のシンポジウムで再認識することができました。
フローレンスは、これからも当事者の声をしっかりと受け止め、
このシンポジウムで共有した未来を実現すべく、より一層邁進していきます。

障害があってもなくても、医療的ケアが必要でもそうでなくても、
全ての子どもたちが活き活きと過ごす場所があり、保護者の誰もが笑顔で子育てができる社会。
そんな社会を目指していきたいと思います。


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