Staten Island's disabled face an urgent crisis

STATEN ISLAND, N.Y.

纽约州史泰登岛

-- They are among our borough's most vulnerable.

——他们是我们行政区最弱势的群体之一。

But efforts to put a strategy in place to house and care for those with developmental disabilities is -- at best -- in a frustrating holding pattern, with critics pointing at a glaring lack of urgency.

但制定一项战略来安置和照顾发育障碍人士的努力充其量也处于令人沮丧的停滞状态，批评者指出明显缺乏紧迫感。

Advocates go so far as to say that Gov.

支持者甚至说州长。

Andrew Cuomo's failure to provide support for the intellectually and developmentally disabled (I/DD) community is a violation of their civil rights.

安德鲁·科莫未能为智力和发育障碍 (I/DD) 群体提供支持，这侵犯了他们的公民权利。

Lack of state funding is preventing new services and programs from opening, and causing existing ones to stretch resources extremely thin, prohibiting them from expanding to meet the needs of the ever-growing I/DD community.

国家资金的缺乏阻碍了新的服务和项目的开放，并导致现有的服务和项目资源极度匮乏，无法扩展以满足不断增长的 I/DD 社区的需求。

"The bubble is going to burst," said the parent of a 21-year-old son with autism.

“泡沫即将破裂，”一名 21 岁自闭症儿子的家长说道。

The "bubble" that she is referring to is the significant jump in the number of people who were diagnosed with intellectual and developmental disabilities in the late 1990s and, since that time, that bubble keeps on growing.

她所指的“泡沫”是指 20 世纪 90 年代末被诊断患有智力和发育障碍的人数大幅增加，从那时起，泡沫不断扩大。

"We knew that this was going to happen; this was foreseen.

“我们知道这将会发生；这是预见到的。

It's been going on for years and we've been warning [people] about this for years.

这种情况已经持续多年，我们多年来一直在警告[人们]这一点。

More and more children are being diagnosed with [I/DD] but the services -- and the funding -- are not growing with the community," she said.

越来越多的儿童被诊断出患有 [I/DD]，但服务和资金并没有随着社区的增长而增长，”她说。

This mother is very familiar with all sides of a critical issue that gets very little exposure: She's the parent of a child with severe autism and has lived it, but also knows the depth of the policy crisis as a trained social worker.

这位母亲非常熟悉一个很少曝光的关键问题的各个方面：她是一名患有严重自闭症的孩子的家长，并且经历过这种情况，但作为一名训练有素的社会工作者，她也了解政策危机的严重程度。

Because the crisis is so widespread and largely ignored, she asked that her name not be used out of fear her son will lose services they waited to so long to get, in fear of retaliation for speaking out.

由于这场危机如此广泛且在很大程度上被忽视，她要求不要使用她的名字，因为她担心她的儿子会失去他们等待已久的服务，担心因发表言论而遭到报复。

"My son was on a wait list for eight years!" she said about the crucial educational program for her son, adding that even her professional "connections" in the field could not help her fast-track the services her son so desperately needed.

“我儿子在候补名单上等了八年！”她谈到了对她儿子至关重要的教育计划，并补充说，即使她在该领域的专业“人脉”也无法帮助她快速获得儿子迫切需要的服务。

"I know people that are still waiting.

“我知道还有人在等待。

These places don't have enough funding," she said.

这些地方没有足够的资金，”她说。

She does not place blame on the borough's elected officials, who she says have recognized the problems and done what they can -- with what little they have -- for the community on Staten Island.

她并没有将责任归咎于该行政区的民选官员，她说他们已经认识到了这些问题，并尽其所能——用他们仅有的一点点——为史坦顿岛的社区服务。

The vast policy and funding initiatives that are needed remain in limbo because of a lack of urgency or action in Albany and a languishing study Cuomo promised.

由于奥尔巴尼缺乏紧迫感或行动，以及科莫承诺的一项研究陷入困境，所需的大规模政策和资金举措仍处于悬而未决的状态。

Over several months, efforts to get the governor or the key agency responsible for these services to comment have been met with silence.

几个月来，试图让州长或负责这些服务的关键机构发表评论的努力却遭到了沉默。

Rallies have been popping up across New York state -- and across Staten Island - advocating for additional housing, funding, early intervention services and a united call for action by the community as a whole.

纽约州和史坦顿岛各地纷纷举行集会，呼吁提供更多住房、资金、早期干预服务，并呼吁整个社区共同采取行动。

The Staten Island Developmental Disabilities Council (SIDDC), in an effort to draw attention to the crises, staged protests across Staten Island, visiting the offices of elected officials, pleading with them to hear their concerns and asking them to put pressure on the governor.

为了引起人们对危机的关注，史坦顿岛发育障碍委员会（SIDDC）在史坦顿岛各地举行抗议活动，拜访民选官员的办公室，恳求他们听取他们的担忧，并要求他们向州长施加压力。

The SIDDC's Islandwide effort included a stop at the Staten Island Advance.

SIDDC 在全岛范围内的努力包括在史坦顿岛前进站停留。

The advocates asked that the Advance take an in-depth look at their concerns and aid them in their efforts for better services, more funding and an increased awareness of community.

倡导者要求先行组织深入了解他们的担忧，并帮助他们努力提供更好的服务、更多的资金和提高社区意识。

"The families need to keep doing what they're doing and make noise.

“这些家庭需要继续做他们正在做的事情并发出声音。

Let the governor and the administration know how the lack of action in Albany is affecting them," said Assemblywoman Nicole Malliotakis (R-Staten Island/Brooklyn).

让州长和政府知道奥尔巴尼缺乏行动对他们有何影响，”女议员妮可·马利奥塔基斯（R-Staten Island/Brooklyn）说。

"[Gov.

“[政府。

Cuomo] does respond to public pressure and it's so important that families keep writing to him and local legislators and let him know that you're not going to forget come election day.

科莫]确实对公众压力做出了回应，这一点非常重要，家人要不断写信给他和当地立法者，让他知道你不会忘记选举日的到来。

I think that's something that's important to communicate," Malliotakis said.

我认为沟通很重要，”马利奥塔基斯说。

Malliotakis recently joined the Assembly Minority Task Force on Protecting the Rights of People with Developmental Disabilities, along with Assemblyman Ron Castorina (R-South Shore), and heard the testimonies of families from across the borough.

马利奥塔基斯最近与议员罗恩·卡斯托里纳（R-South Shore）一起加入了议会少数派保护发育障碍者权利工作组，并听取了来自整个行政区家庭的证词。

After holding forums across the state, the task force plans to put together a report with suggestions to aid lawmakers develop real solutions to better serve and support people with I/DD.

在全州举办论坛后，工作组计划编写一份报告并提出建议，帮助立法者制定真正的解决方案，更好地服务和支持 I/DD 患者。

"It's a real issue and that's exactly why we did this.

“这是一个真正的问题，这正是我们这样做的原因。

The idea behind this report is to push it and try to get the attention of the governor," Malliotakis said.

这份报告背后的想法是推动它并试图引起州长的注意，”马利奥塔基斯说。

She said the report will have a number of suggestions to help shape legislation, and though they all won't get adopted, typically "three or four of the big ones" will.

她说，该报告将提出许多建议来帮助制定立法，尽管它们都不会被采纳，但通常“三到四个重大建议”会被采纳。

Family members, advocates and providers say the governor's failure to address issues, some of which can be life-threatening, is a direct violation of the Americans with Disabilities Act.

家庭成员、倡导者和服务提供者表示，州长未能解决一些可能危及生命的问题，直接违反了《美国残疾人法案》。

A lawsuit filed in in the Western District of New York against Gov.

在纽约西区对州长提起的诉讼。

Cuomo states that the "insufficient availability of appropriate adult residential settings violated the Americans with Disabilities Act and the Rehabilitation Act."

科莫表示，“适当的成人居住环境不足违反了《美国残疾人法》和《康复法》。”

Kerry Delaney, acting commissioner of the Office for People with Developmental Disabilities (OPWDD), also is named in the federal class action lawsuit.

发育障碍人士办公室 (OPWDD) 代理专员克里·德莱尼 (Kerry Delaney) 也在联邦集体诉讼中被点名。

The lawsuit is referring to the nearly 11,000 individuals in the state of New York who are currently on OPWDD's residential request list (RRL).

该诉讼涉及纽约州目前在 OPWDD 的居住请求名单 (RRL) 上的近 11,000 人。

The RRL has been even larger, at around 14,000 individuals, but some were lucky enough to be placed over the last few years.

RRL 规模更大，约有 14,000 人，但有些人很幸运在过去几年中被安置。

Although the lawsuit was filed in Buffalo, the lack of residential options for individuals with I/DD stretches through New York state and trickles all the way down to Staten Island.

尽管诉讼是在布法罗提起的，但 I/DD 患者缺乏居住选择的情况一直延伸到纽约州，并一直延伸到史坦顿岛。

Of those 11,000, nearly 2,000 people are considered in emergency need of placement and some of them live on Staten Island.

在这 11,000 人中，有近 2,000 人被认为需要紧急安置，其中一些人住在斯塔滕岛。

The nearly 9,000 individuals who are not considered of emergent need make up the remainder of the RRL -- many of whom also live on Staten Island.

RRL 的剩余成员中有近 9,000 名不被视为紧急需要的人，其中许多人也居住在史坦顿岛。

One Staten Island family is taking care of their daughter with I/DD.

斯塔顿岛的一个家庭正在照顾患有 I/DD 的女儿。

But the daughter is 53-years-old and is being taken care of by parents who are 82 and 79.

但女儿已经53岁了，由82岁和79岁的父母照顾。

Their daughter has been on the residential request list for years.

他们的女儿多年来一直在居住请求名单上。

This past summer, the daughter broke her hip and required surgery and rehab in order to recover.

去年夏天，女儿的臀部骨折，需要手术和康复才能康复。

Due to her increased needs, the parents' age and lack of progress finding a secure residence, her parents made the difficult decision of placing her in a local rehabilitation center.

由于她的需求增加、父母的年龄以及寻找安全住所的进展缓慢，她的父母做出了艰难的决定，将她安置在当地的康复中心。

Over half of the individuals on the RRL are not unlike this family and have caregivers who are 60 or older.

RRL 中超过一半的人与这个家庭没有什么不同，并且有 60 岁或以上的照顾者。

The infamous Willowbrook State School shut its doors for the last time in September 1987, 13 years after it was renamed the Staten Island Developmental Center.

臭名昭著的 Willowbrook 州立学校最后一次关闭是在 1987 年 9 月，也就是更名为史坦顿岛发展中心 13 年后。

The repulsive and inhumane conditions discovered at the facility resulted in sweeping legal rulings regarding the treatment of the develomentally disabled across the nation as mandated by the courts and the Willowbook Consent Decree.

该设施中发现的令人厌恶和不人道的条件导致根据法院和《Willowbook 同意令》的规定，对全国范围内发育性残疾人的待遇做出了全面的法律裁决。

One such ruling -- the "Olmstead Decison'' issued in 1999 by United States Supreme Court -- was based on the Americans with Disabilities Act and states that individuals with I/DD have the right to receive state-funded supports and services in the community, as opposed to in institutionalized settings.

其中一项裁决——美国最高法院 1999 年发布的“奥姆斯特德判决”——以《美国残疾人法案》为基础，规定患有 I/DD 的个人有权在社区（而不是在机构化环境中）获得国家资助的支持和服务。

The ruling came after a Georgia resident Lois Curtis -- and later Elaine Wilson -- brought legal action against Tommy Olmstead, who was commissioner of the Georgia Department of Resources at the time.

这项裁决是在佐治亚州居民洛伊斯·柯蒂斯（Lois Curtis）以及后来的伊莱恩·威尔逊（Elaine Wilson）对当时担任佐治亚州资源部专员的汤米·奥尔姆斯特德（Tommy Olmstead）提起法律诉讼之后做出的。

The lawsuit alleged that the state did not help Lois and Elaine, who both had intellectual and developmental disabilities, receive treatment and support in the community, forcing them to go in and out of mental health hospitals in the state even though their physicians said they were able to live in the community - with proper resources.

该诉讼称，该州没有帮助患有智力和发育障碍的路易斯和伊莱恩在社区接受治疗和支持，迫使他们进出该州的精神健康医院，尽管他们的医生说他们能够在社区生活 - 有适当的资源。

"[If] the state's treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of others with mental disabilities," the High Court stated.

高等法院表示：“如果州的治疗专业人员确定社区安置是适当的，则受影响的个人不会反对从机构护理转移到限制较少的环境，并且考虑到州可用的资源和其他精神障碍患者的需求，可以合理地安排安置。”

The Supreme Court went on to say that "institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that person isolated are incapable or unworthy of participating in community life.

最高法院接着表示，“将能够处理社区环境并从中受益的人安置在机构中，延续了这样一种无根据的假设，即被隔离的人没有能力或不值得参与社区生活。

Historically, confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement and cultural enrichment."

从历史上看，被限制在机构中会严重削弱个人的日常生活活动，包括家庭关系、社会交往、工作选择、经济独立、教育进步和文化丰富。”

Families are terrified that lack of services, community integration and funding to keep up with the Olmstead decision and other Willowbrook-related rulings will force a return to the time when institutionalized services were the norm and places like the Willowbrook State School were used to "warehouse" the disabled.

家庭担心，缺乏服务、社区融合和资金来跟上奥姆斯特德决定和其他与威洛布鲁克相关的裁决，将迫使他们回到制度化服务成为常态、威洛布鲁克州立学校等地方被用来“收容”残疾人的时代。

It may have been called a school, but Willowbrook was anything but.

它可能被称为学校，但威洛布鲁克绝不是。

Vulnerable adults and children were starved, mistreated, sexually abused and left in rooms or cages for hours, if not days, on end without any attention.

弱势成人和儿童遭受饥饿、虐待、性虐待，并被留在房间或笼子里数小时甚至数天，得不到任何关注。

Advance reporter Jane Kurtin began uncovering the questionable practices of Willowbrook in the 1960s, but it wasn't until ABC-News' Geraldo Rivera's expose Willowbrook: The Last Disgrace that Willowbrook and the institutionalization of individuals with I/DD was placed in the national spotlight.

早报记者 Jane Kurtin 在 20 世纪 60 年代开始揭露 Willowbrook 的可疑做法，但直到美国广播公司新闻频道的杰拉尔多·里维拉 (Geraldo Rivera) 揭露 Willowbrook：最后的耻辱，Willowbrook 和对 I/DD 患者的收容才成为全国关注的焦点。

In the years that followed, that glaring light and relentlentless coverage by the Advance and other media led to legal and policy reforms that transformed how those with developmental disabilities are cared for.

在接下来的几年里，《进步报》和其他媒体的耀眼光芒和不懈报道引发了法律和政策改革，改变了发育障碍人士的护理方式。

And a return to such inhumane treatment cannot, and will not, happen.

这种不人道待遇的回归不可能也不会发生。

But with the population at an all time high, and still growing, the question is: How will the state maintain those reforms and provide those in need with the services, housing and care they not only require -- by law -- but deserve as members of our community?

但随着人口达到历史最高水平并且仍在增长，问题是：国家将如何维持这些改革，并为有需要的人提供他们不仅是法律规定的而且作为我们社区成员应得的服务、住房和护理？