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.”