Family Profiles

This July, Easter Seals and three working families who have children with disabilities are meeting with Senior White House Leaders and members of Congress to tell them about the positive outcomes for children with disabilities and their families thanks to Medicaid.

Right now, Medicaid provides critical, often life-saving, services to millions of Americans living with disabilities. Congress is considering budget proposals that would slash funding for these important programs, potentially eliminating the safety net they provide.

Easter Seals wants to reaffirm why Medicaid must not be cut. At the July meetings, our three families will share their personal stories. You can read them below.

Shannon, age almost 13

Easter Seals Central & Southeast Ohio (Columbus)

Having a child with a disability can be a full time job, and then some. Because Shannon has multiple disabilities, she was unable to take care of most, if not all, of her basic needs. Shannon's mom was her full-time caregiver, and as a result, could not work for pay outside the home.

Shannon came to Easter Seals when she was just two years old, with a primary diagnosis of Cerebral Palsy. Since then, she's received physical and occupational therapies and other services to help her walk, learn and take care of her personal needs. Easter Seals has also been there for her to help her attain new strength after her numerous surgeries. Medicaid pays for a portion of these therapies, and charitable donations to Easter Seals make up the difference.

Shannon is now a fiery 12-year-old redhead with a bright future. Today, thanks to Shannon's hard work and the dedicated staff at Easter Seals, Shannon walks with crutches and can take care of her basic needs. She goes to school with children who don't have disabilities. And, her mom is able to work 30 hours a week, part time, for pay.

Al, age 8

Easter Seals Arkansas (Little Rock)

Born with Down syndrome and a heart condition, Al was just four weeks old when an Easter Seals therapist first visited his home to help his parents learn how to care for him. At the time, James, Al's dad, was in medical residency training working 100 hours a week, and his mother, DeAnn, was receiving COBRA benefits from her former job as a registered nurse. Because of Al's many health and medical needs, DeAnn chose to leave her career to better care for her son.

When Al's young parents' private insurance benefits quickly ran out only covering 12 weeks of his therapy services Medicaid kicked in to provide the almost daily physical and occupational therapy Al needed to strengthen his muscles, as well as speech therapy to teach him to swallow and talk. And because of Medicaid, when he had pneumonia multiple times as a baby and toddler, his parents were able to provide 24-hour home care to their son so he didn't need to be hospitalized. Medicaid also helped offset the cost of his medical and home care, including diagnostic procedures and medical equipment.

As Al grew and gained enough strength, he transitioned into Easter Seals local preschool. Today Al is an active eight year old who attends public school and still receives intensive physical, occupational and speech therapy services twice a week. He is always on the go—jumping, running, climbing and learning and loves being on the local Miracle League baseball team and taking tae kwon do lessons.

"Medicaid was, and remains, the lifeline our family needed when insurance benefit limits would have made adequate therapies and medical care impossible for our son. The therapies Al continues to receive ensure his physical and mental development toward the goals of an independent and productive life in his community,“ says James.

Sisters Chelsy and Rebeka, ages 3 and 5

Easter Seals Rio Grande Valley Texas (McAllen)

Chelsy and Rebeka are sisters with special needs who live in McAllen, Texas. Both girls receive therapy to address their multiple disabilities and put them on the path to reach their developmental milestones.

Rebeka, now age five, was born prematurely and was delayed in reaching various developmental milestones. She had many medical challenges, trouble with her kidneys and lungs, didn't crawl until age two, nor could she eat any solid foods or drink water, requiring a feeding tube at a very young age. Rebeka also needed help learning to walk. While her younger sister Chelsy doesn't face as many of Rebeka's challenges, she does receive speech therapy at Easter Seals Child Development Center in her home town.

Their mom, Joselyn, says that “Medicaid is absolutely essential for my family to help our daughters gain the skills they need to be successful in life.”

Joselyn knows what its like to go without Medicaid as there are times when she earns slightly more than the qualifying limit. For example, during the last uncovered time period, their family covered a significant amount of out-of-pocket expenses to remove Rebeka's feeding tube.

“Those months without Medicaid for our family are horrible. Even if our income were to double or quadruple, we still couldn't afford to pay for all of the services our daughters need,” Joselyn adds.

The loss of Medicaid can be very challenging for families like Rebeka and Chelsy's who have to manage the added expenses that come with having a special health care need. Because both girls received the health services they need, when they need them most, each is reaching her potential. They have great futures ahead!