The Medicaid Waiting Game: Parents Tell Their Stories
More than half of all children with autism are insured by Medicaid. Some states insure children with autism through Home and Community-Based Services Waivers -- special programs that waive certain Medicaid rules so that people with great needs can be served in their communities rather than in institutions.
Maryland has a Medicaid waiver for children with autism. The Maryland waiver provides respite care, environmental accessibility adaptations, family training, and other unique services, in addition to more common Medicaid services such as physician and hospital care.
The number of children who can be served by the Maryland autism waiver is capped at 900. Almost 4,000 children are on a waiting list for services. The Maryland legislature is now considering whether to increase the number of waiver slots so that more children can be served. The parents of three children on the waiting list report on their visit to the state capital in Annapolis to testify before the legislature for additional slots.
Going to Annapolis with other autism parents is always a special experience. It is so gratifying to be among people, even if you have never met them before, that completely and immediately understand your life experiences. And it’s all the more special when you’re rallying together for an important cause.
My testimony focused on my daughter Rory’s therapeutic program, which a Medicaid waiver could enhance outside of what she receives in school, as well as her medical issues in the past few years that have resulted in substantial out-of-pocket expenses for our family.
I noted that Rory has been on the autism waiver wait list for five years, and she is only #1,633 out of 3,900 names. There was an audible gasp in the committee room. And that gasp startled me. What’s more shocking? That Rory is only at number 1,633 on the list after all these years? Or, that I am surprised that this surprises other people?
In the years I have been volunteering with Autism Speaks, I have had many opportunities to speak about autism and our amazing kids. Our family has been on this journey for five years now, so I am a veteran. There are ups and downs, triumphs and struggles. I forget that many people out there naturally have no idea what our life is like.
That day reminded me that I shouldn’t be complacent and that we have to continue to speak out. Speak for Rory, and for other children who are still waiting or have yet to be diagnosed. We rally together to fund science, affect policy, and make change for a better future for everyone on the autism spectrum.
Getachew Kalati, a Washington, DC cab driver, is the single dad of three children, including his son Naod who has autism. Naod, who will soon be 12, was diagnosed with autism at the age of 2 ½. Getachew emigrated to the United States from Eritrea 30 years ago.
Getachew has visited Annapolis to urge more Medicaid waiver slots for children such as his son. “I’m a single father and now it’s becoming difficult for me,” he said. “I’m the only person who can control him, I have to watch him around the clock.
“I’m not sure, I’m just not sure,” he replied when asked what he will do if he is unable to get Medicaid services for his son.
My son, Samuel, has been on the autism waiver since the spring of 2009. Out of the 3,900 children currently on the registry, he holds slot number 405. When I first placed him on the waiver, he met the qualifications to receive services. But over the last four years, he has continued to progress to such a point that if his number came up tomorrow, I’m honestly unsure of whether or not he would still qualify for services.
So then why am I fighting so hard for more slots, more coverage for more children, when my own son may likely never benefit? I am fighting because I know about autism. I know all about meltdowns, communication inabilities, and fears of the future. I know about sleepless nights, about living and breathing autism. I know those dark circles I see beneath the weary eyes of the parents I meet at these budget hearings and meetings to discuss what more can be done for “these families.” I am one of “these families.” Just one - out of tens of thousands.
What the autism waiver means to us is hope. Therapy services means teaching our children how to function, how to live and allow the potential we know they have not only to be realized, but to thrive. Respite services means that we as parents can get a break as needed without worrying if our child is being watched by someone unqualified to care for them in our absence. Environmental adaptions means making physical changes to our homes to enable our children to function as normally as possible while staying safe. Medical services grant life-sustaining treatments that enrich the quality of life.
Hope is what needs be present at the dawn’s awakening each morning. I’ve been told by many who have received waiver services that they feel they have been given their life back. It has enabled many families to live as normal a life as possible while managing autism. The thought that this list of entitlements could provide such life gives hope for the 3,900 families awaiting services – mine included. Three-thousand, nine-hundred families can be impacted in such a way that the child receiving services will have a chance to grow, to function, to really live. For us, life can be restored and hope will be realized. Oh, I dare to dream!