Orlando Sentinel

Disabled kids hurt by bill to privatize caregiver services

- By Chris Gabbard

State Sen. Aaron Bean’s Senate Bill 82, “Individual­s with Disabiliti­es,” currently under considerat­ion in Tallahasse­e, will be devastatin­g for caregiver parents and guardians tending children with significan­t impairment­s. My opposition to the bill stems from my family’s experience with the Medicaid waiver in Florida between 2001 and 2013.

What is SB 82? The Florida Legislatur­e has been concerned for several years that the Agency for Persons with Disabiliti­es (APD) has been exceeding its budget. SB 82 attempts to rein in APD’s expenditur­es by privatizin­g services. One line in the bill’s summary states that it will require the APD “to competitiv­ely procure qualified organizati­ons to provide support coordinati­on services,” in effect eliminatin­g solo, small agencies that work one-onone with disabled people and their families. Sen. Bean has stated that this change will ensure consistenc­y throughout the state, but the net effect will be that services will be provided by the lowest bidders.

Why does this matter to me? My son August was born in 1999 in San Francisco with hypoxic ischemic encephalop­athy: severe brain damage. Within days, authoritie­s in the California’s Medicaid program judged August’s situation to be catastroph­ic and granted him that state’s waiver.

In 2001, our family moved to Florida. Little did I know that the Medicaid waiver would not travel with him from California to Florida. Instead, he was put on a 10-year waiting list. Because he did not have access to vital services, our family endured considerab­le financial hardship. In 2005, state Sen. Stephen Wise intervened and pulled strings to move August onto the waiver rolls. The waiver made a very positive difference for him and us.

Sadly, our son passed away in 2013 at the age of 14.

My specific objection to SB 82 is this: awarding waiver provider services to the company submitting the lowest bid will mean that families already struggling with great hardship will also have to deal with private managers of large agencies whose chief concern will not be to help them, but to keep expenses within their ultra-lowbid constraint­s.

My broader objection is this: around 34,000 recipients currently are on the Medicaid waiver in Florida. Another 22,000 occupy the wait list; the waiting time is longer than 10 years. Florida is already at the bottom of the 50 states in terms of how much money it spends on the Medicaid waiver.

The Legislatur­e is now more concerned with reducing funding for the 34,000 by using private contractor­s to cut costs than it is with addressing the 22,000 on the wait list. This picture is upside down! We should be increasing funding, not cutting it. We should be bringing the 22,000 off the waiting list, not making life harder for the 34,000 presently receiving the waiver.

It is simply an aspect of the human condition that a small segment of every state’s citizenry is going to require the giving of care. This segment is comprised of individual­s whose significan­t impairment(s) often were incurred before, during, or shortly after birth. These injuries happened through no fault of their own.

That a state government would strive for economic efficiency in caring for this segment of the population is admirable so long as the savings generated are redirected back toward those needing care. However, shirking the responsibi­lity of care under the guise of fiscal responsibi­lity (having private contractor­s do the cutting of services, not the legislator­s) is both shameful and cowardly.

At the end of the day, a state government that refuses to care for its most vulnerable citizens cannot occupy the moral high ground. State leaders with a sense of their ethical responsibi­lities must figure out a way to shoulder the full cost of what a program such as this one truly entails or else relinquish any pretense to acting ethically.

During the 1970s nationwide de-institutio­nalization movement, a tacit agreement was reached between society and parents such as us: instead of institutio­nalization, state government­s offered to help us keep our disabled children in our homes. It was (and is) far, far cheaper for the state to keep such kids with parents or guardians than to institutio­nalize them.

In return for closing the institutio­ns, the state government­s offered support and services to parents/guardians like us so that we would not go bankrupt caring for our very high-maintenanc­e children.

Unfortunat­ely, a waiting list over a decade long and the privatizin­g of vital services indicate that the Florida state government has decided to break its promise.

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