Oklahoma Poised To Cut Off 20,000 Disabled and Elderly People From Life-Sustaining Home Care

Rebecca Anger December 18, 2017

'Spitfire' Sabel of Philadelphia, Pennsylvania, joins more than 200 protestors from ADAPT, a grass-roots community that organizes disability rights activists to engage in nonviolent direct action, in blocking the intersection of 15th Street NW and Pennsylvania Avenue near the White House for nearly four hours September 20, 2010 in Washington, DC. (Photo by Chip Somodevilla/Getty Images)

In ear­ly Novem­ber, the Depart­ment of Human Ser­vices (DHS) in Okla­homa sent let­ters to more than 20,000 dis­abled and elder­ly res­i­dents inform­ing them that the in-home care ser­vices they were cur­rent­ly receiv­ing as part of the ADvan­tage Waiv­er and In-Home Sup­ports Waiv­er for Adults pro­grams could be cut in one month. The full con­se­quences of elim­i­nat­ing such vital pro­grams are unimag­in­able but include reduced qual­i­ty of life, poor health out­comes, exten­sive job loss and increased care costs.

I know first­hand that these cuts pose an exis­ten­tial threat to dis­abled peo­ple in Okla­homa, because I am a dis­abil­i­ty rights advo­cate and con­cerned waiv­er pro­gram recip­i­ent in Illi­nois. Med­ic­aid waiv­er pro­grams allow the dis­abled and elder­ly to receive long-term care ser­vices — such as bathing, dress­ing, toi­let­ing, feed­ing, cook­ing and clean­ing — in their own homes, instead of insti­tu­tion­al­ized set­tings. These ser­vices are crit­i­cal for pro­tect­ing the rights and free­doms of the dis­abled and elder­ly — and allow­ing peo­ple to con­tribute to soci­ety as pro­duc­tive mem­bers. The pro­grams ensure a high­er qual­i­ty of life for all recip­i­ents and are fis­cal­ly respon­si­ble for states, when com­pared with high­er costs of insti­tu­tion­al­ized care.

So why would a state decide to elim­i­nate these programs?

DHS says they have no choice. The state is fac­ing a $215 mil­lion deficit in 2018. The agency needs $69 mil­lion to fund all the pro­grams it is cut­ting, includ­ing the Med­ic­aid waiv­er pro­grams, for the 2018 fis­cal year. Ear­li­er this year, the leg­is­la­ture tried to increase the tax on cig­a­rettes by $1.50 a box, but then lob­by­ists from Philip Mor­ris USA and R.J. Reynolds chal­lenged the increase and won at the state Supreme Court lev­el. Frus­trat­ed law­mak­ers then attempt­ed to impose a six-cent increase on fuel, which also failed, despite Okla­homa hav­ing one of the low­est tax­es on fuel in the country.

Cut­ting vital waiv­er pro­grams that pro­vide life-sus­tain­ing care to dis­abled and elder­ly res­i­dents is not the answer to a bud­get short­fall. Peo­ple who are unable to afford assis­tance on their own could see a dra­mat­ic ero­sion in the qual­i­ty of their lives, or could even lose their lives. Thou­sands of work­ers will like­ly lose their jobs, and those who are lucky enough to go to a nurs­ing home will cost the state at least three and a half times more. We can­not let Okla­homa get away with these cuts, nor can we accept this action as a dan­ger­ous precedent.

Dur­ing the first part of Novem­ber, the Okla­homa leg­is­la­ture did man­age to agree on a stop­gap bud­get, which dipped into the state’s rainy-day fund to finance the waiv­er pro­grams through March 1, 2018. Begin­ning in Feb­ru­ary 1, 2018, DHS intends to send anoth­er round of let­ters explain­ing that the waiv­er pro­grams will be eliminated.

This delay buys peo­ple like Richard Ander­son an extra three months to find alter­na­tive care. Ander­son is a found­ing mem­ber of the Okla­homa chap­ter of ADAPT, a nation­al grass­roots orga­ni­za­tion that advo­cates for com­mu­ni­ty liv­ing. Thanks to the ADvan­tage waiv­er, he lives inde­pen­dent­ly with cere­bral pal­sy. You’ll see peo­ple go into nurs­ing homes, which iron­i­cal­ly would cost the State of Okla­homa three and half times more,” he tells In These Times. “[The state] is leav­ing tran­si­tion­ing up to the indi­vid­u­als and their fam­i­lies, if they even have family.”

Ander­son says that there are not enough beds avail­able in nurs­ing homes through­out the state to accom­mo­date the influx of new peo­ple need­ing care — and that peo­ple will die with­out services.

The elim­i­na­tion of the waiv­er pro­grams will also have a major impact on Oklahoma’s work­ers. More than 450 provider agen­cies will lose their main source of income, and it has been esti­mat­ed that at least 10,000 nurs­es, home care work­ers and case­work­ers will lose their jobs.

Many peo­ple with dis­abil­i­ties who are served by the pro­gram work or vol­un­teer in their com­mu­ni­ties. With­out the home care work­ers who get them ready for the day, they will be forced to stop par­tic­i­pat­ing in all aspects of soci­ety. The elim­i­na­tion will also impact the eco­nom­ic capa­bil­i­ties of fam­i­ly mem­bers who will have to leave the work­force to take care of their loved ones.

These cuts are poised to roll back decades of gains that were hard-fought by dis­abled com­mu­ni­ties. For the last 40 years, dis­abil­i­ty activists and orga­ni­za­tions like ADAPT have tire­less­ly worked to gain the right to live in the com­mu­ni­ty. Elim­i­nat­ing waiv­er pro­grams will erase this work, and peo­ple with dis­abil­i­ties will again be shut out of the community.

We have seen this before. Until 2010, in Ten­nessee rough­ly 97 per­cent of peo­ple with dis­abil­i­ties lived in nurs­ing homes. Res­i­dents in the 1990s and ear­ly 2000s were so des­per­ate for free­dom that a cen­ter for inde­pen­dent liv­ing in Mem­phis arranged for peo­ple to leave nurs­ing homes in the mid­dle of the night and flew them to Col­orado, where in-home ser­vices were provided.

With the help of the ACLU of Okla­homa and the Okla­homa Dis­abil­i­ty Law Cen­ter, Ander­son and oth­ers have filed a class action law­suit chal­leng­ing the state’s elim­i­na­tion of the waiv­er pro­grams. In doing so, Ander­son hopes to save the waiv­er pro­grams in Okla­homa and send a mes­sage to oth­er states that this is inhumane.”

Activists say the law is on their side. Title II of the Amer­i­cans with Dis­abil­i­ties Act (ADA) requires that, A pub­lic enti­ty shall admin­is­ter ser­vices, pro­grams, and activ­i­ties in the most inte­grat­ed set­ting appro­pri­ate to the needs of qual­i­fied indi­vid­u­als with dis­abil­i­ties.” The Supreme Court in their 1999 Olm­stead deci­sion stat­ed that the ADA pro­tect­ed peo­ple from a seg­re­gat­ed set­ting, such as a nurs­ing home.

How­ev­er, the U.S. Depart­ment of Jus­tice has pro­vid­ed guid­ance that explains states can vio­late the ADA and Olm­stead deci­sion because of bud­get cuts, but pub­lic enti­ties have a duty to take all rea­son­able steps to avoid plac­ing indi­vid­u­als at risk of institutionalization.” 

The law­suit argues Okla­homa has not tak­en rea­son­able steps to avoid the insti­tu­tion­al­iza­tion risk, and Okla­homa still has options before law­mak­ers cut these vital ser­vices. The leg­is­la­ture could make cuts to oth­er non-vital ser­vices that would not have blood on their hands. Slash­ing a pro­gram that saves mon­ey in the long run does not make sense when there is a bud­get deficit.

In the mean­time, Ander­son and oth­er activists from the Okla­homa chap­ter of ADAPT will be engag­ing with law­mak­ers and protest­ing their rights to live in the com­mu­ni­ty. He encour­ages oth­ers to get involved and call state leg­is­la­tures to edu­cate them on the impor­tance of the waiv­er pro­grams. I’d like to think,” he said, it would ral­ly more per­sons with dis­abil­i­ties to speak up and fight for their lives and rights.”

Rebec­ca Anger is a dis­abled social activist and an aspir­ing attor­ney in Chica­go, focus­ing on health and civ­il rights law. When she is not fight­ing injus­tice, she likes to cook and cre­ate new recipes and spend time with her husband.
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