Navigating te Katie Beckett Waiver
By Ann Elliot

In the debut issue of Kids Enabled the article, The High Cost of Helping Your Child, outlined several ways for a parent to obtain services for a child with disabilities. Sometimes the process is frustrating and exhausting but the driving force is one of the most important reasons that we, as parents and healthcare professionals, can have to help our children.

“I need your help.” There is nothing that pulls at the heartstrings more than that statement.

A mom who was at wits end called one day and uttered those words. I assured her that we would do everything we could to help her. She said that she had just received a denial letter from the Katie Beckett office and did not know what to do. Katie Beckett Deeming waivers are Medicaid forms that are filled out to obtain therapies and other services that a child with a disability might need. We set up a meeting and after looking at the information, I was amazed that even though her child had several developmental problems and obviously needed services, she had been denied for the Waiver.

The reason for denial was unclear at first, but after a great deal of research I discovered that the problem was one simple misplaced check mark, the whole basis of the denial. I worked with Mom, read all of the therapy, school and specialist reports, then, compiled a new Deeming Waiver and a Letter of Appeal adding in additional information. Mom then carried the new forms to her Pediatrician for approval and signature. Her doctor was amazed at the differences in our form and the first one. The information was always there and had been included in the previous packet, but was not on the DMA-6A or the Care Plan, therefore was never seen.

The time invested in reading documents and adding the additional information really paid off. Two weeks after the information had been sent to Medicaid, Mom came by to say her child had been approved! We just hugged and cried together. Without her Deeming Waiver, this child would have had to do without services and care that she sorely needed in order to improve and prevent any decline in her condition. The costs of these services would have been impossible for her parents to pay for and since they had already exhausted every other resource, this was their last hope. That is what makes my job worthwhile.

The forms that are required in order to obtain assistance can sometimes be intimidating to parents. The mass amount of information and paperwork needed to get a child, even a child that clearly needs services, approved under any agency can sometimes seem overwhelming and impossible. With all of the recent and expected future changes within the Medicaid system, nothing seems easy or certain, especially when it comes to Katie Beckett Deeming Waivers.

Until the guidelines started to change parents seemed comfortable with Katie Beckett forms and knew what they needed to provide every year.

Now, the forms look different, the questions aren’t quite the same and more and more restrictions are being placed on needed therapies. Children that may need speech, occupational or physical therapy three sessions a week may only be approved for one or two. It can be confusing and certainly frustrating to parents and healthcare professionals alike.

General Tips

• Gather all information from your child’s school, specialists, and therapists and take copies with you to your Pediatrician. Remember, your physician might already have some of this information, but probably not all.
• Check with your Pediatrician and see what their turn-around time is for Deeming Waivers. This will give you an idea on how much time you will need to gather information and get everything back to Medicaid before your deadline date.
• Find out who will be filling out your form and how much experience they have.
• Make notes to give to your physician regarding any changes in your child’s care in the past year. It is important to let your doctor know about anything that might reflect a change in the deeming waiver; especially changes in therapies, surgeries, any new diagnosis, etc.
• If you are not satisfied that your waiver can be done in a timely manner, you might consider contracting a consultant or outside source for help.
• Ask questions, ask questions, ask questions. There are so many “do’s and don’ts” to these forms. The most important thing is, if you don’t know, ask. If one person doesn’t give you a satisfactory, clear or concise answer that you feel comfortable with, ask someone else. Yes, it is time consuming, but if the end result is getting approval for your child to receive the services he or she needs, then it is worth it. Never assume that the person filling out the form is more knowledgeable or familiar with the form than you are. If you are not sure, ask. The worst thing you could possibly do is not ask questions.
• Remember, the only bad question is the one you don’t ask.

Ann Elliott is a registered nurse of 33 years and a mother of three for 28 years. She is currently the co-founder and director of a consulting agency that provides assistance to parents of children with disabilities in completing Deeming Waivers. Both she and her staff are dedicated to helping parents help their children. More information can be obtained on her Web site, www.kbhelp.net.