No Boundaries

Ben playing mallets at All Town Band, June 2012

Tonight, days after Katie Beckett died at the age of 34, Ben performed with classmates from seven other elementary schools in the All Town Band. Although Ben had initially been nervous about playing both in his school and All Town band, and I knew that my involvement at all rehearsals was going to be necessary (I’m Ben’s roadie), no one batted an eye at the thought of Ben joining the band. Inclusion is the norm, not the exception, for Ben.

Of course it wasn’t always that way. In 1981, Katie, who had spent 3 1/2 years in a hospital, was allowed to come home to live when President Ronald Reagan created a policy change to Medicaid that allowed children who require care comparable to a level of hospital care to receive that care at home. And guess what? Home care costs 1/6 of the hospital cost.

This Medicaid waiver, in honor of Katie and her family’s plight, was named the “Katie Beckett waiver” in most U.S. states. In Massachusetts, it is called the Kaleigh Mulligan waiver, after a similar girl’s situation. Prior to Reagan’s intervention, Medicaid would only pay for such services when the child was hospitalized. If you went home, you were on your own.

Now, this type of waiver can pay Ben’s nursing care, his multiple equipment purchases such as his power wheelchair, his walker, his hospital bed, a toilet chair and bath seat, and an ergonomic seat that allows him to sit comfortably at a table but can be put on a manual wheelchair base as a backup to his power chair. The waiver also pays for the rental of his oxygen concentrator, air compressor, pulse oximeter, the numerous boxes of catheters, sterilized water, trach ties, trach filters, tubing, and more that arrive each month.

Aging in place-the current push in long-term care which advocates for elders to stay in their homes instead of moving to nursing homes– takes on a new meaning when the age of the population is in single digits. Why split up families just because one child needs significant medical care? Why hurt these families even more? Why not show the world that all people, no matter their abilities or medical conditions, have something to offer?

Tonight Ben showed that he has something musical to offer the world. On mallets (bells), his favorite percussion instrument, he played perfectly, not missing a single note, while his nervous mom watched from the side of the stage. And in my pocket were extra trach filters, paid for by a Medicaid waiver, in case Ben got gunky and need a quick change during the concert.

Over 500,000 children and their families have benefited from a Katie Beckett waiver since 1981. Thank you Katie for your advocacy from such a young age and thank you Julie Beckett for showing parents like me how to envision change. Your road traveled has made our journey so much easier. There will always be diversions, road blocks and forks, but through your examples of courage and strength, we know what to do.