こんにちは、医ケア協議会事務局長の駒崎です。
先日、内閣府の方から「総理が参加する、国家戦略特区諮問会議に是非お越し頂き、ご提案を」とお誘いを受けました。
あいにく僕はオランダの小学校で行われているシティズンシップ教育を見に行く予定があったので泣く泣くお断りしたら
「大丈夫です。オランダから提案してください」
と。ビデオ会議システムによって、アムステルダムから参加できるということでした。
いつのまにか日本政府がハイテク化してる！とびっくりしてしまいました。
【医療的ケア児と、排除する社会】
さて、そんな畏れ多い機会を頂いて、総理や官房長官臨席の会議で提案させて頂いたのが、「医療的ケア児が普通に学校に行けるよう、訪問看護の居宅しばりを外して」というテーマです。
現在、医療的ケア児は増えています。昔だったら出産時に亡くなっていたケースでも、医療の進歩と医師の情熱で、助かるようになってきたためです。しかし、その子ども達は経管栄養や胃ろう等、医療デバイスと共に生きていくことになります。
このような医療的ケア児たちは、保育園や幼稚園ではほとんど受け入れてもらえません。すると、親（特に母親）は、仕事を辞めて２４時間３６５日、看護と介護に身を粉にすることになります。それが経済的打撃となり、またある時は心身ともに疲弊しきって、心中などにつながっていってしまいます。
【義務教育にも「ふつう」に通えない】
しかし、せっかく障害児保育が広がっても、小学校にあがる年になると、医療的ケア児はふつうに小学校や特別支援学校には行けません。医療的ケアが必要、ということで送迎バスにも乗れませんし、看護師のいない学校では親が同伴しなくてはなりません。
そうすると、当然親（ほとんどは母親）は仕事を辞めざるを得ませんし、心身の負担に加え、経済的負担ものしかかってくることになります。
全ての学校では無理にせよ、せめて特別支援学校くらいには、十分な数の看護師さんがいてもいいはず。文科省も頑張って増員していますが、追いついてはいません。
でも、ある規制を外せば、この状況は大きく前進します。
【訪問看護の居宅しばり】
ある規制とは、「訪問看護の居宅しばり」です。訪問看護は、訪問看護ステーションから、高齢者や障害者の方々の、医療的なケアを行うために、彼らのお家に訪問します。在宅医療の要として定着していて、訪問看護ステーションの数は、全国で９０００カ所を超えています。
この訪問看護ステーションから訪問看護師の方々が、学校への送迎バスに同行してくれ、授業中も帯同し、適宜医療的ケアをしてくれたならば、親がずっと学校に付き添わねばならない、という状況は解決することができます。
しかも、学校に入る前から、医療的ケア児家庭の多くは、何らかの形で「かかりつけの訪問看護ステーション」を一般的には持っています。
よって、その子をよく知った看護師さんが担当してくれることにもなります。
しかし、こうしたことは、今はできません。それは健康保険法第二款八十八条に、このような記述があるためです。
「訪問看護事業（疾病又は負傷により、居宅において継続して療養を受ける状態にある者に対し、その者の居宅において看護師その他厚生労働省令で定める者が行う療養上の世話又は必要な診療の補助を行う）」
「居宅において」という文言なんです。これが「居宅『等』」であれば、状況は違ったのに。
【国家戦略特区で制度を変える】
国家戦略特区は、こうした従来の規制の想定していなかったこと、あるいは融通の利かないところを、いきなり全国規模で修正すると大変なので、限られた地域で実験的にやってみましょう、という制度です。
過去、僕は保育士不足なのに保育士試験が年１回っておかしいよね、ということで「複数回やってくださいよ」、と提案したら、年２回にして頂きました。結果は、保育士試験合格者のうち、２回目試験での合格者は１０％にも上るようになりました。
また、子どもが通う小規模認可保育所なのに、大人の障害者用のトイレを設置しなくてはならない、というバリアフリー法の過剰適用も、この特区で修正してもらいました。
そんなわけで、今回も国家戦略特区に提案してみた、というわけです。
【先行きは不透明】
とはいえ、一度や二度提案しただけで、これまで何十年間変わらなかったものが変わる、というものではありません。粘り強くお願いし続けていかねばなりません。
次は、現場の医療的ケア児の保護者の皆さんからのリアルな声を集め、厚労省にデータを届けていこうと思っています。この記事をご覧の保護者の皆さん、お手すきの際に訪問看護に関するアンケートにお答え頂けると嬉しいです。
＝＝＝＝＝＝＝＝＝＝＝■＝＝＝＝＝＝＝＝＝＝＝
居宅以外への訪問看護アンケート
https://questant.jp/q/20160810_ecareshien
＝＝＝＝＝＝＝＝＝＝＝■＝＝＝＝＝＝＝＝＝＝＝
今後も全国医療的ケア児者支援協議会並びにフローレンスは、制度と制度の狭間で苦しむ医療的ケア児の親子のために、現場で保育をしつつも、国や自治体を相手に制度改善を要望して参りたいと思います。
障害児家庭当事者の皆様のみならず、健常児家庭や一般の企業・地域社会に関心の輪が広がっていくことを、強く願っています。
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