Meadow Rue Merrill’s article about the life and death of her adoptive daughter, Ruth, was deeply moving (“Letting Ruth Go,” December 11). As a public health official in Boston, I was also struck by its social import – it clearly illustrates policy issues that confront parents as well as professionals who care for youth with special health care needs.
In 2007, a Massachusetts consortium concerned with these issues was funded by the Deborah Munroe Noonan Memorial Research Fund to investigate causes delaying receipt of what is known as “durable medical equipment,” or DME. Families report, and our study confirmed, delays of many months between prescription of a wheelchair, lift, hospital bed, or other item and its delivery. To the waiting child, those may be months of immobility, social isolation, and health risk. To the child’s family, they are months of frustration and heartbreak.
Our study identified several barriers to timely receipt of DME. First, lack of a common definition of “medical necessity” leads to drawn-out debates about whether a child needs a prescribed item. We should hold insurers to a definition of pediatric medical necessity that leaves room for the child’s developmental needs, averting the kind of argument that slowed approval of Ruth’s wheelchair.
Second, the DME process involves multiple players – clinicians and families, but also therapists, manufacturers, and payers – and no one is in charge of making it work smoothly. Clear deadlines for each step in the process would help. This is especially important for children who have private insurance and Medicaid as a secondary plan. Medicaid won’t pay until it receives a clear denial from the primary insurer. If the primary payer won’t go on record with a denial, the child waits.
Third, Medicaid and other insurers don’t seem to police DME vendors. Our study found, surprisingly, that the process often bogs down at the companies that sell DME. Insurers, especially Medicaid, have clout, but don’t have a mandate to address timeliness.
Our lawmakers can and should address these barriers through state mandates on private insurers and through Medicaid rules. At the Boston Public Health Commission, we recently created a first-ever city position for a special health needs coordinator, who will work with families and children to achieve precisely this type of needed change.
Deborah Allen / Director, Bureau of Child, Adolescent, and Family Health, Boston Public Health Commission
Merrill’s story of her daughter took me back to February 2004, when my Debby died. My daughter was multiply handicapped, medically fragile, and locked in a body that did not work. Her doctors didn’t think she would make it past 8, but for 28 years she gave my wife and me joy and pride, as well as a lot of hard work mixed with anxiety and occasional fear. After Debby was gone, the only thing that felt right was finding people and organizations that could make use of the wheelchairs, suction machines, latex gloves, and other medical equipment that supported and sustained her. The electronic equipment that allowed her to control a computer with her eye muscles went to the Boston College Campus School, which developed the system. Much of the other equipment went to a new group home for multiply handicapped, medically involved young adults. Seeing the picture of Ruth’s chair, which looked a lot like Debby’s, along with Merrill’s article, brought that entire experience back. Losing Debby left a hole in my life. Thank you for sharing Ruth’s story; it brought back both happy and sad memories.
Ron Rosenbaum / Arlington
The morning we read this story was the fourth anniversary of the passing of our 15-year-old daughter Maggie. She, too, suffered from cerebral palsy and died unexpectedly in the night. It was Maggie’s wheelchair that was the last and hardest of her possessions to let go. We also wanted it to benefit another child in need and found Chariots of Hope, a wonderful organization that recycles wheelchairs. Maggie’s life was challenging but full, happy, and rewarding for her, and joyous for us. After laying her to rest we inscribed on her headstone a phrase that reflected her life, and perhaps Ruth’s as well: “The power of the powerless to light the way with love and joy.”
Daniel and Colleen Gallagher / Osterville
“Letting Ruth Go” brought me to the edge of tears and prompted deep reflection. The love displayed by the writer and her husband and the value of Ruth and of her short life truly reflect the heart of God in Jesus Christ. The article was perfect for the season of Advent and enriched my soul.
Margaret A. Schatkin / Associate Professor, Department of Theology, Boston College
Merrill and her wonderful family show us by example qualities of love and generosity and serve as role models for us all.
Joyce Field Pastor / Weston
The Merrill family’s love and actions speak to the finest human qualities that are possible. Thank you for teaching us the range of human kindness.
Michael Reich / Danvers
TIPS FROM A PRO
Regarding Elizabeth Gehr-man’s “The Half-and-Half House” (December 4), what I have learned in my nearly 30 years as a landlord of a two-family is to trust my instincts. Going through a realtor is not always a good thing – both times I have been burned: The tenants were destructive or had a history of eviction, and the issues were not disclosed to me. Background and credit checks are OK, but I have learned that people will disclose only information that is positive. And if other property owners have tenants that they want to get rid of, they are unlikely to give these renters a bad report if a prospective landlord calls.
Paula Caravella / Plymouth