The Denver Post - - DEN­VER & THE WEST - Jen­nifer Brown: 303-954-1593 or jen­brown@den­ver­post.com

“In this case, you’ve got pub­lic re­sources be­ing used to shield the peo­ple they serve from the in­for­ma­tion they want,” she said.

“Closed-door club”

Al­liance op­er­ates sim­i­lar to other ser­vice-provider agen­cies that lobby at the Capi­tol. Colorado’s 17 com­mu­nity men­tal health cen­ters pay a fee to the Colorado Be­hav­ioral Health­care Coun­cil, which spends some of the funds on lob­by­ing, for ex­am­ple. Still, the lob­by­ing arm for the dis­abil­ity sys­tem is unique in the ex­tent of its tu­mul­tuous re­la­tion­ship with fam­i­lies tak­ing care of kids with dis­abil­i­ties.

Par­ents have re­ferred to the pay­ments to Al­liance Colorado, which rep­re­sents the 20 boards at the Capi­tol, as a “se­cret fee.” They also have com­plained that Al­liance is a “closed-door club” that in­cludes just 25 of the hun­dreds of agen­cies that pro­vide ser­vices for peo­ple with dis­abil­i­ties. Be­fore ad­mit­ting a new mem­ber, Al­liance seeks rec­om­men­da­tions from other agen­cies.

De­spite re­quests from The Den­ver Post, Al­liance re­fused to re­lease its an­nual bud­get or a list of mem­ber­ship fees it re­ceives from its 45 mem­bers— 20 com­mu­ni­ty­cen­tered boards and 25 agen­cies that em­ploy ther­a­pists and home aids for peo­ple with dis­abil­i­ties.

Al­liance has an an­nual bud­get of $667,000, of which $574,000 comes from mem­ber­ship dues, ac­cord­ing to the non­profit’s fed­eral tax records. Al­liance re­ported spend­ing $45,000 on lob­by­ing, but it is un­clear whether prepa­ra­tion for lob­by­ing and meet­ing on pub­lic pol­icy were counted as lob­by­ing. Lob­by­ists have dis­cre­tion when re­port­ing their hours — some count all their work, while oth­ers count only face time with law­mak­ers.

Tax records show at least two of the 20 boards have spent money each year on their own lob­by­ists. Rocky Moun­tain Hu­man Ser­vices, the tar­get of the dam­ag­ing city au­dit, re­cently sus­pended its lob­by­ist, whowas paid $12,000 per year, as part of a cut­back in ad­min­is­tra­tive costs.

Mem­ber­ship dues in Al­liance are 0.15 per­cent of each board or agency’s bud­get for in­tel­lec­tual and de­vel­op­men­tal dis­abil­ity ser­vices, said Josh Rael, ex­ec­u­tive di­rec­tor of Al­liance. He told The Den­ver Post to ask each of the 45 mem­bers for their fee pay­ment be­cause it was not the “role” of Al­liance to re­lease the in­for­ma­tion.

“I truly re­gret you are tak­ing this as a lack of trans­parency,” Rael said.

Cost of mem­ber­ship

Sev­eral of the 20 com­mu­ni­ty­cen­tered boards across Colorado di­vulged the cost of mem­ber­ship in Al­liance, which ranged from $600 to $42,909. They said mem­ber­ship pro­vides help­ful in­for­ma­tion about state and fed­eral pol­icy that oth­er­wise would be hard to keep up with be­cause of lim­ited staffing.

Peo­ple with dis­abil­i­ties and their par­ents said they re­al­ize the lob­by­ing dol­lars would not buy a huge amount of ser­vices or ther­apy, but the fact the money is spent to in­flu­ence law­mak­ers with lit­tle in­put from fam­i­lies is a “gut punch.”

“When peo­ple are strug­gling for ser­vices and when they have care­givers who are be­ing paid low wages and can’t make ends meet, that just punches you in the gut,” said Julie Reiskin, ex­ec­u­tive di­rec­tor of the Colorado Cross-Dis­abil­ity Coali­tion, an ad­vo­cacy group that rep­re­sents peo­ple with dis­abil­i­ties and their fam­i­lies. “We are poor. The sys­tem kind of makes us poor. We can’t af­ford lob­by­ists.”

Al­liance speaks for the boards who man­age Med­i­caid funds and other ben­e­fits for peo­ple with dis­abil­i­ties, not for the fam­i­lies and care­givers, said Reiskin and other ad­vo­cates.

For ex­am­ple, fam­i­lies pushed for pro­posed leg­is­la­tion from Sen. Irene Aguilar, D-Den­ver, that would force the boards to an­swer pub­lic in­for­ma­tion re­quests and re­quire the state au­di­tor to re­view Al­liance’s books ev­ery five years. Fam­i­lies also have failed to gain trac­tion over the years on a pro­posal that would al­low par­ents to choose to di­rectly man­age their chil­dren’s funds in­stead of us­ing a com­mu­nity-cen­tered board as a fis­cal in­ter­me­di­ary.

Us­ing “pub­lic dol­lars to lobby for pub­lic dol­lars” is fun­da­men­tally both­er­some, said Mar­cia Tewell, ex­ec­u­tive di­rec­tor of the Colorado Devel­op­men­tal Dis­abil­i­ties Coun­cil, an­other ad­vo­cacy group in tune with fam­i­lies. When cities pass mill levies for dis­abil­ity ser­vices, peo­ple as­sume the money will go to the “cute kids” pic­tured on cam­paign yard signs, not to­ward fundrais­ing and lob­by­ing, she said.

“The process seems like a wellfed amoeba that can­not re­sist feed­ing it­self even more, while the in­di­vid­u­als for which the money is in­tended go hun­gry,” Tewell said.

Al­liance of­fi­cials, how­ever, said it is com­mon prac­tice for non­prof­its to be­long to pro­fes­sional as­so­ci­a­tions that lobby. They also ac­knowl­edged the trade as­so­ci­a­tion needs towork on its re­la­tion­ship and com­mu­ni­ca­tion with peo­ple with dis­abil­i­ties and their fam­i­lies. Public pol­icy di­rec­tor Ellen Jens by said show­ing fam­i­lies what Al­liance ac­com­plishes is dif­fi­cult be­cause of the “in­cred­i­ble com­plex­ity” of the fi­nan­cial sys­temthat funds peo­ple with de­vel­op­men­tal and in­tel­lec­tual dis­abil­i­ties.

Greater trans­parency

Al­liance’s Rael said the or­ga­ni­za­tion’s main goal for years has been to elim­i­nate or re­duce wait­lists for dis­abil­ity ser­vices. “We are all greatly con­cerned by the per­cep­tion among some par­ents that Al­liance works against fam­i­lies,” he said. “We are hav­ing dis­cus­sions in­ter­nally aboutwhat ad­di­tional trans­parency so­lu­tions we can of­fer from Al­liance.”

The Den­ver Post re­quested the bud­gets of the 20 com­mu­nity-cen­tered boards to re­view lob­by­ing and ad­min­is­tra­tive costs. A hand­ful, in­clud­ing Rocky Moun­tain Hu­man Ser­vices, pro­vided their full bud­get, while sev­eral pro­vided only a one- or two-page bud­get sum­mary.

The ex­ec­u­tive di­rec­tor of the board serv­ing Boul­der County, Imag­ine!, posted a video on YouTube af­ter the au­dit of Rocky Moun­tain say­ing “Imag­ine! is not Rocky Moun­tain Hu­man Ser­vices.” Mark Emery touted his board’s fis­cal re­spon­si­bil­ity and its trans­parency.

In an e-mail, Imag­ine!’s di­rec­tor of pub­lic re­la­tions Fred Hobbs told The Den­ver Post: “I’m afraid I can’t share our de­tailed bud­get.” Imag­ine!’s mem­ber­ship an­nual dues to Al­liance to­tal $33,040, Hobbs said.

Devel­op­men­tal Path­ways in En­gle­wood, among the largest of the com­mu­nity-cen­tered boards, re­leased its fed­eral tax forms and a sum­ma­rized bud­get but not its item­ized bud­get.

Sen. Aguilar said she in­tro­duced her trans­parency bill in part be­cause she learned the ma­jor­ity of the com­mu­nity-cen­tered boards, in­clud­ing Rocky Moun­tain, use the same au­dit­ing firm, which did not un­cover the prob­lems cracked open by Den­ver City Au­di­tor Tim O’Brien.

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