达娜·史密斯·鲁塞尔（Dana Smith-Russell）是将人们与残疾人生活时所需的服务联系起来的专家。作为对工作灾难性受伤的人的医疗案例经理，罗素是一部分倡导者，部分承包商，据她所关心的那些人所关心的 - 一部分守护天使。
罗素继续去看医生。她与保险公司协调以确保涵盖生命护理。她找到并调整车辆，以便人们可以四处逛逛并修改房屋以满足新的需求和能力。
And yet, when her own son contracted a rare condition that threatened his life, Russell — with her education, experience, and connections — felt powerless to help him find the treatment he needed.
“我有两个硕士学位。我习惯直接与保险公司打交道。我有医生支持我。但是，我努力寻找资源来挽救儿子的生命，”她说。“我并不是在说很难找到基本服务。我说的挽救我儿子的生命。透明
In 2018, Connell Russell, who is autistic and非语言, contracted a case ofstrep throat。随着感染的清除，他突然出现了新的症状。这个13岁的男孩只是停止进食。没有说服力。每一口都成为一场战斗。
Connell received a diagnosis of pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS), a condition that can result in any number of complications, including extreme irritability, obsessive-compulsive behaviors, hallucinations, tics, panic attacks, and even catatonic, trance-like states. In Connell’s case, PANDAS completely shut down his ability to eat.
达娜（Dana）和金·罗素（Kim Russell）开始了很长时间，有时会恐怖地寻求治疗。
“Our son had a diagnosis that was very new to the medical field,” Russell said, “so it sometimes felt as though I was battling the whole medical system, because I couldn’t find doctors to treat him.”
这不是他们第一次代表他战斗。当康奈尔（Connell）首次进入佐治亚州农村地区的学校时，他的学校没有充分的能力来满足他的特殊需求。康奈尔（Connell）的医生提供了有关他的状况和需求的详细报告。罗素研究了管理特殊教育的法律。最终，学校系统迎接了挑战。
罗素说：“现在有很多服务可供我们所在地区的特殊需求学生提供，其中包括一个巨大的新感觉室，但是我们必须与学校系统紧密合作才能完成。该地区有钱，但需要时间和鼓励为康奈尔等学生创造资源。”
要点：吸引教育工作者
当您寻找校内服务时，请自我教育自己必须提供的学校必须提供的服务Individuals with Disabilities Education Act。If your child has anIEP or a 504 plan, make sure you understand andagree withthe interventions they describe. If you feel your child would benefit from a different approach, ask for it specifically.
在他们的小镇上寻找医疗服务同样困难。当康奈尔（Connell）年轻时，没有小儿物理疗法，言语疗法或学校以外的职业治疗服务。一家人去了最近的主要城市亚特兰大，以获得他需要的服务。
而且由于随后自闭症被认为是一种先前存在的疾病，因此他们为大多数服务付出了零钱。
“与保险公司合作是我的工作，由于儿子的自闭症诊断，我无法为儿子获得保险。我们被九家不同的保险公司拒绝了，”罗素回忆道。“我愿意支付所采取的任何费用 - 但这是在保护先前的条件之前。”
Then, when Connell went in for an $8,000 dental surgery, a surgical center professional asked whether they had considered applying for children’s disability benefits through the Social Security Administration (SSA). Russell knew about the benefits but assumed she wouldn’t qualify for the income-based program.
She got in touch with a member of the Georgia Governor’s Council on Disabilities, who advised her to travel to the SSA office, in person and with the whole family in tow, to apply. Within 29 days, Connell was receiving benefits.
Takeaway: Apply for social security benefits for your child
补充安全收入（SSI）和社会保障障碍保险（SSDI）对儿童的福利因国家而异，因为一些州为付款贡献了额外的资金。在许多州，有资格获得SSI或SSDI福利的儿童自动有资格获得医疗补助。这个official guide将帮助您了解2021年收益的工作方式。
As weeks bled into months and treatment after treatment failed, Connell visibly shrank. At one point, he was hospitalized for nine days after pulling out his feeding tubes. There were mornings when his room was so quiet his parents were afraid of what they would find when they opened the door.
Trying to mute her emotions, Russell decided to view Connell as she would one of her clients. Finding help became her second full-time job. She got involved with a national PANDAS organization. She worked with the National Institutes of Mental Health (NIMH) in Washington, DC.
Eventually, broadening the net brought results.
由于康奈尔（Connell）的处境是如此极端，因此引起了医学研究专家的注意。许多患有大熊猫的孩子拒绝某些食物或短期拒绝，但康奈尔的拒绝是完整的。研究人员建议她停止不起作用的方案，并尝试一种称为静脉免疫球蛋白（IVIG）的治疗方法，该治疗有助于减轻一些2016年熊猫儿童的症状
要点：扩展搜索的参数
If expertise is not available locally, connect with acommunity parent resource center, a state disability commission, or a national organization that focuses on your child’s specific disability. Investigate whether a
那是一扇大门打开的时候。Daniel Rossignol博士, Connell’s autism specialist, agreed to administer IVIG treatment at a facility in Melbourne, Florida. But a significant hurdle remained: cost.
IVIG to treat PANDAS was not approved by insurance companies in the United States (or by Canada’s publicly funded healthcare system — Kim Russell is Canadian). The medication alone, not counting travel or equipment, averages $7,000 to $10,000.
The family was preparing to mortgage their home when a close friend reached out through social media, offering to set up a GoFundMe to cover Connell’s medical expenses. With the funds from that campaign, the family traveled to Florida and Connell’s treatment began.
After 360 days of total food refusal, he weighed 62 pounds.
Takeaway: Explore nontraditional sources of funding
Government程式aren’t the only resource for parents who need help paying for healthcare and services for the needs of their children. Other sources that may be able to help include:
Connell’s recovery was uncertain, and the treatment process was difficult. Back home, feeding and giving medication were still a struggle five times a day. Though doctors had initially expressed skepticism about the family’s ability to carry out the daily care, Kim managed with the help of their neighbors and Connell’s twin brother.
Six months after IVIG, Connell walked down the stairs one morning, opened the refrigerator, and unwrapped a leftover burrito. He began to pick at it. Tiny nibbles. His family watched in stunned silence. By the end of the day, he’d eaten it all.
There have been setbacks since that morning — a viral infection prompted a relapse and another round of IVIG, and the COVID pandemic meant a year of anxious isolation — but Connell is mending.
In the end, Connell’s life was saved, not by a single superhero, but by a miraculous patchwork. Government assistance, brilliant doctors and researchers, advocates in state and national organizations, generous friends and neighbors, and behind everything, the fierce persistence of his mothers.
“For 18 months, all of our energy went into keeping Connell alive and getting him the resources he needed,” Russell said. “We navigated through a lot of grief. But we had support from friends I hadn’t seen in years, and reconnecting with those people gave me strength.”
要点：分享您的旅程
Finding help for your child can be a lonely business. Documenting your experiences, connecting with support groups, accepting help from others, and getting respite for yourself are all important to your long-term success and well-being. As isolating as it can feel to parent a child with a developmental disability, you are not alone.