Families of children with special needs across Utah are cheering and hoping for relief. The Medically Complex Children's Waiver is reopening enrollment from July 1st - July 31st 2021. This Medicaid Waiver enables children with complex medical needs to have access to Medicaid based on their own income, waiving the family income. Eligibility is based on level of medical and special needs, among other requirements.
Financial burden is a real issue for many Utahns rising to the challenge of taking care of their children with multiple medical needs. This Medicaid Waiver will make a huge difference for many families who have been struggling to pay for medical bills on their own. In several situations, both parents work in order to provide and pay for the medical care needed which makes them ineligible for Traditional Medicaid based on family income. Some families have a child or children who require constant care requiring at least one parent to stay home and not work. Even in most of these circumstances, the family's income is just a little too high to qualify for Medicaid for their child or children. Family vacations or going out to eat are often out of the question.
These are hard working parents like you and I. They love their children with all their hearts and they are rising to the challenge every day. Many have a degree that they would love to use and they put it on hold for the higher cause of taking care of their child. Several parents are serving each other, serving their families, their churches, and their communities. These are parents who get asked - how do you do it? The answer is usually the same - I just do it. The truth is that they should probably be living at the hospital if they aren't already. Many have transformed their homes into hospitals or therapy centers.
Caregiver burn out is a real thing. Typically, these are parents and caregivers who feel like they can't do it all. These caregivers include parents, step-parents, adoptive parents, grandparents, and other family and friends who take a child under their wing to nurture and give them the best life possible. Doctor appointments are multiple and usually to a specialist. Drive time is exhausting, not to mention making sure their child is safe in transport - including seizure response, trying to keep airways clear, and staying calm during meltdowns. Many of these children have sensory overload, communication delays, and physical impairments. I hear from so many parents and caregivers, "I don't know if I can keep going - I'm so tired."
A tremendous benefit of the Medically Complex Children's Waiver is a few hours of respite for these caregivers. Now, approved children and their caregivers will have a chance to do many daily tasks that most take for granted. They will have someone to assist them in taking children to doctor appointments. They will be able to go to the grocery store without having to worry about taking their child out and being exposed to viruses. They will be able to do some self-care like going to their own doctor appointments or take a nap after being up all night with a child who requires constant monitoring. Marriages are often strained and date nights may become a novel possibility.
The Medically Complex Children's Waiver will empower families, give children access to medical care that they may not have otherwise been able to have, and it will strengthen communities. Many thanks go to the advocates for children with special health care needs in Utah and to the Utah State Legislature for listening to the critical needs of Utah's children.
For more information, please visit: https://medicaid.utah.gov/ltc-2/mccw/
Written by Jeanette Pascoe
