If you care for your child with special health care needs as a parent CNA (certified nursing assistant), and are paid through Medicaid funds, you may have experienced some changes lately in how many hours are approved. Colorado Medicaid recently began using a new questionnaire, the Pediatric Assessment Tool, to determine a child’s level of need for skilled nursing care. Many families are reporting that their home health hours have been reduced as a result, because their child’s needs don’t match what the tool measures.
A recent meeting with families, advocates, and Medicaid executives captured both the concerns of families and the reluctance of state officials to stop using the tool without another plan in place, as described in this week’s Westword article and a March 27 article in the Colorado Springs Independent. Family Voices staff member Sam Murillo has been part of ongoing conversations in the disability community, and Susan Hogarth shared her experience as the mother of a “high-functioning” child who needs constant supervision, yet who is only granted 3 1/2 hours a day of paid care through the assessment.
Colorado Medicaid officials maintain that the tool is an improvement on past practices that did not adequately or consistently document how decisions about home health care needs were made. But as advocates, we are concerned that the state has mended their economic troubles at the expense of hundreds of families of children with disabilities, who are now facing their own economic crises.
As part of our ongoing work to bring the voices of families before legislators, state administrators, and other policy makers, Family Voices Colorado is teaming up with other disability advocacy groups to gather stories of families affected by this change. If your family has experienced parent CNA hours and income reduced, or other harmful effects of the use of the Pediatric Assessment Tool, please email pediatricassessmenttool @ gmail.com or call 720-263-7413 so we can lift up your voice as well.
UPDATE: Watch this video (5:42) to hear family caregivers talk about what it means to them to care for children and grandchildren with special health care needs in their own home.