Queen for a Day
My daughter Lindsay recently received the coveted title of Prom Queen. I never imagined this could be possible.
Lindsay just turned 46 and is presumed to be the oldest living person – of only fifty worldwide with Marshall-Smith syndrome, a condition for which there is no cure. People with Marshall-Smith have multiple anomalies. They have a unique appearance, intellectual as well as physical disabilities, and short stature due to advanced bone age.
So not your typical prom queen.
Lindsay attends New Gateways, a day program in Waterford that "aims to enrich the lives of adults with intellectual and developmental disabilities."
New Gateways' prom was a meaningful event planned by the team that Lindsay participates in five days a week. There are approximately 12 clients on Lindsay’s team along with support professionals. The team leader and the rest of the staff worked diligently for weeks to ensure the prom would be a success. Invitations were sent to parents, group homes and guardians. Community outings were organized to shop for balloons, background scenery for photographs, paper goods, and other festive supplies that would make the occasion a big hit. The majority of the food and drinks were contributed by staff and parents.
But the biggest effort on behalf of the staff was locating gently used formal attire for those individuals that couldn’t shop or purchase these items on their own. They assisted clients with their clothing in order to be ready for the party. This was no easy endeavor. Nails were polished, stylish shoes were added to the mix, and lastly, the men sported dress shirts and neck ties. A few bow ties were even spotted at the prom.
Joy was in the air. For those who have no expressive language, their smiles sufficed. They told a compelling story of the love the employees share with the clients every day. Lindsay’s smile was radiant.
When people choose to work with the disabled community, their job is tireless. It takes a special individual to provide guidance and support on a daily basis. These employees should be celebrated for the care they give so generously.
This is Lindsay’s 20th year at New Gateways. After she aged out of the public school system at 26, my husband Jeffrey and I searched for a program that would meet Lindsay’s needs.
When visiting day programs, we came to the realization there weren’t many to choose from that would suit Lindsay and help us feel secure as well. We needed assurances that she would be safe and well cared for. Several of the programs were either too advanced for Lindsay’s skill set or too crowded without appropriate staffing for our consideration.
We found that New Gateways, a nonprofit charitable organization, had a unique combination of nurturing and committed staff. The program offered community-based outings, enhancing client skills through physical and fine motor activities, and social endeavors. They also had primary and secondary transportation services for program participants. We were sold!
Lynn Maginity is the Executive Director of New Gateways. This is her 23rd year in the position. She started at New Gateways as a Direct Support Professional when she was 19 years old. Lynn steadily climbed the ladder to Services Coordinator and then onward to her present position. She continued her studies after receiving an undergraduate degree, then a Master’s in Applied Behavior Analysis and Autism studies from Ball State. Even in her current role, she continues to add to her credentials.
Lynn takes great pride in New Gateways. She commented, “We specialize in Skill Building services in both the facility and community. We pride ourselves in embracing a Culture of Gentleness and following the teachings of Dr. Josh Mcgee. We also offer a Direct Support Apprenticeship program. From 2007 to the present, we have had over 20 apprentices that have moved into managerial and leadership roles within the greater disability community.”
When I asked Lynn about the proposed changes to funding, she stated, “I have experienced numerous situations where funding for the Disability community was in crisis. It almost feels like a never-ending battle of ‘fighting the good fight’ for those without a voice. The most recent proposed cuts to Medicaid are some of the most disturbing and gut-wrenching conversations I have seen in my professional career. These cuts would not only devastate necessary and meaningful services for the disabled, seniors, and children, but they would create widespread harm and safety risks for the most vulnerable of citizens.”
Lynn continued to inform me that in a recent public meeting with Deputy Director Groen of Michigan’s Department of Health and Human Services, there was mention that Home and Community based services could be considered “optional” services and would be at risk for reductions in funding in relation to the proposed Medicaid cuts. These proposals would put New Gateways in a precarious situation. Not only would services to the already 120 participants be reduced or eliminated, but the 150 individuals who are on the waitlist would risk receiving no services at all.
The severity of these cuts is beyond comprehension. Lynn stressed, “Long term services, such as HCBS (Home and Community Based Services) would be considered “optional.” This is unfathomable to me. People with disabilities deserve opportunities and fulfilling lives like anyone else. To achieve that, they need the necessary services and support in place to ensure their health and safety are not compromised. The proposed Medicaid cuts could result in serious harm and even death for those affected. Medicaid saves lives!”
More than 2.6 million people in Michigan are covered by Medicaid. It is the nation’s largest provider of health care insurance. According to Katy News, CEO of The Arc of the United States, “The proposal would cause higher co-pays for people just above the poverty line and will force many to skip care and risk emergencies. Deep federal cuts will leave states with impossible choices and fewer tools to help people. And lastly, work requirements and eligibility checks every six months will bury people in red tape and take away care from those who need it most.”
Governor Whitmer shared similar sentiments: “More than 700,000 Michiganders including people fighting cancer, seniors in nursing homes, new moms, veterans, kids and those living with disabilities could lose their health care. Michiganders will suffer because these proposed cuts go too far, too fast and everyone, including those not on Medicaid, will end up paying more for their insurance.”
These issues scare me to the core. Lindsay looks forward to attending New Gateways and seeing her friends on a daily basis. Political affiliation should not take center stage when it comes to the care of our loved ones. I want Lindsay to continue to enjoy parties in the New Gateways gym, attend weekly music programs, and take part in the annual Luau and Anniversary celebrations at the end of each summer.
But most of all, Lindsay deserves to continue in a program that is nurturing, supportive and helps her to have a fulfilling life. And being prom queen for a day makes me believe that anything is possible.