Dis­abled kids hurt by bill to pri­va­tize care­giver ser­vices

Orlando Sentinel - - OPINION - 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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