FOR IMMEDIATE RELEASE
BRIDGTON, MAINE—“I’M MAINE TOO” : YOUNG, DISABLED WOMAN FIGHTS FOR HER BENEFITS AND HER LIFE
On June 1, 2018 Raegan Storck, age 18, was to begin receiving crucial, life supporting home and community benefits. Hours before her services began, the Maine’s DHHS pulled the plug citing a conflict in the system with existing benefits. Eight months worth of applications, approvals, and preparations were immediately stalled, leaving the young woman without crucial supports.
Raegan was born with a rare brain malformation in 1999, leaving her physically and intellectually disabled. Developmentally she is much like an eight-month-old child. She is also wheelchair bound, g-tube fed, nonverbal, has a seizure disorder, and is legally blind. Raegan is totally dependent on others for her care and lives at home with her parents with limited support of skilled nursing for 8 hours per day.
Raegan is now an adult and eligible to receive additional home and community supports to keep her in her loving home and out of a nursing facility. Her case manager has applied for these appropriate and essential benefits through two separate waivers, which would save the State of Maine hundreds of thousands of dollars over placing Raegan in a nursing home. These “Shared Living” benefits are designed to allow the family to remain together and have a trained, experienced family member assist the person with disabilities with daily life for which they receive a modest stipend.
After receiving several levels of approval, Raegan Storck was informed by a State of Maine OADS Resource Coordinator that she would need to end level 5 nursing to start receiving Shared Living benefits under this specific waiver program, as it was a “conflict.” If Raegan gives up nursing, then her mother alone would be responsible for her 24/7 care without an opportunity to sleep or leave her home. The Shared Living stipend equates to less than $4 per hour and is not a duplicate benefit under the law. Upon further inquiry, it appears Raegan may be able to receive these benefits under another waiver, however, she is currently on the waiver’s priority 2 waiting list due to lack of funding.
The State of Maine and DHHS has made no effort to reach out to Raegan and her family to try to resolve this conflict and ensure her benefits are received timely and appropriately. Deb Snyder, Raegan’s mother, reports they will have no choice but to file a formal grievance and fight for Raegan.
“It’s simply ridiculous. The idea a person who is already eligible for the highest level of skilled care must go without life saving nursing to add modest home and community supports is appalling. If I were not here supporting my daughter the 16 hours a day we don’t have a nurse, a skilled nurse would have to be placed here at the state’s expense. In fact, due to Raegan’s multiple and profound disabilities, she qualifies for such care, yet living in a rural community and with a nursing shortage, staffing additional hours of nursing care is not likely and extremely expensive. I cannot leave her to get a job, as we don’t have enough nursing to cover my absence. See our dilemma? Although I have 18 years experience caring for Raegan, I am not a skilled or licensed nurse. I am a crucial part of her care team, yet I cannot be the only one responsible for her care 24/7. No one person could. The Shared Living program seemed an answer to a prayer, allowing families like ours a small bit of security and most importantly being able to stay together. I believe the intention of the program’s creation was to provide appropriate supports and also save money. Just running the numbers quickly, the State of Maine would save over $130,000 per year providing the Shared Living stipend and also 8 hours a day of skilled nursing for Raegan. Take away the nursing and its life risking and impossible. Take away the stipend then nursing expenses for Raegan will be astronomical. We’re trying to be responsible to our adult daughter and also to our state, yet the red tape is binding us all. ” – Deb Snyder, Raegan Storck’s Mother
Raegan Storck’s family has launched a media and social networking campaign to raise awareness about this issue. They call upon the State of Maine to provide crucial and life saving benefits to its most vulnerable citizens by funding existing programs, ending waiting lists, and cutting the red tape. The family further calls upon the offices of every official in the State of Maine and all political candidates to speak on this issue.
“We have reached a point where Mainers should know where current and potential political leaders of our state stand on this issue. Raegan isn’t the only one. We have thousands of Maine’s most vulnerable citizens caught on DHHS waiting lists, approved for programs, yet not receiving the benefits they deserve as they remain unfunded. Conflicts, which could be solved internally through diligence and proper management, are shuffled around and stalled, costing citizens additional funds and precious time. I have heard few speak or stand up for this unique population. I am inviting them to do so now. Maine is made of more than business people, politicians, fishermen, farmers, artists, athletes and academics. Raegan is MAINE too and she matters! ” – Deb Snyder, Raegan Storck’s Mother
Deb Snyder for Raegan Storck
328 Main St., Bridgton ME 04009
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