Judge or­ders group home to take man with cere­bral palsy back into care

The Washington Post Sunday - - COMMUTER - VIR­GINIA BY THERESA VARGAS theresa.vargas@wash­post.com

After be­ing stranded for more than a month at a hospi­tal, a 45-year-old man with cere­bral palsy went to a nurs­ing home Satur­day and could, per a judge’s or­der, even­tu­ally re­turn to the less-re­stric­tive group home where he had lived for more than two decades.

At an emer­gency hear­ing Fri­day night, a Loudoun County judge de­nied a re­quest from Alex Scott’s fam­ily to im­me­di­ately send him back his North­ern Vir­ginia group home but also or­dered that the group home take steps in the next two weeks to­ward ac­cept­ing Scott back into its care.

The de­ci­sion was seen as a par­tial vic­tory for Scott’s fam­ily in a stand­off over a feed­ing tube that has cap­tured the at­ten­tion of dis­abil­ity rights ad­vo­cates and an on­line com­mu­nity that has fol­lowed Scott’s plight.

“While we are dis­ap­pointed Alex is not go­ing home to­day, we are en­cour­aged that Loudoun County has been or­dered by the court to take spe­cific mea­sures to make sure Alex goes home as soon as pos­si­ble,” Scott’s sis­ter Sa­man­tha Tu­nador said late Fri­day.

On Satur­day, Scott, who can­not speak, had spent 38 days in the hospi­tal while his fam­ily and care­givers at Ken­twell Group Home ar­gued over what is best for him.

Scott’s rel­a­tives said the group home, where he lived for more than two decades, told them it would not take him back with­out a feed­ing tube. His fam­ily has main­tained that the med­i­cal pro­ce­dure is un­nec­es­sary and would ben­e­fit Ken­twell em­ploy­ees more than Scott.

Scott can­not feed him­self, has dif­fi­culty swal­low­ing and can take as long as 30 min­utes to eat, ac­cord­ing to a com­plaint filed by the fam­ily’s at­tor­ney, John Whit­beck, in Loudoun Cir­cuit Court. But cere­bral palsy is not a pro­gres­sive dis­ease, and the sever­ity of his needs has re­mained the same the en­tire time he has lived at Ken­twell Group Home, the com­plaint says.

Scott had “ex­cel­lent care” and was “very happy” at the group home un­til 2014, when his long­time care­giver re­tired and a new care­giver took over, ac­cord­ing to the com­plaint.

“Now Alex faces leav­ing the only home he has known for 23 years be­cause Ken­twell per­son­nel do not wish to con­tinue to give him the same care he has had for the en­tire 23-year pe­riod,” the com­plaint reads. It also says his physi­cians “have opined that a feed­ing tube is not only un­nec­es­sary, it would be dan­ger­ous for Alex as his stom­ach and in­testines are ab­nor­mally lo­cated in his ab­domen.” The hear­ing came after Med­i­caid de­nied fur­ther fund­ing for Scott’s hospi­tal stay, and he was set to be dis­charged. His fam­ily ex­pects his stay will be tem­po­rary at the nurs­ing home, one that the com­plaint de­scribed as “more re­stric­tive and un­nec­es­sar­ily in­ten­sive in care.”

Loudoun County At­tor­ney Leo Rogers said Satur­day that pri­vacy laws limit what he can say about the case. But he said the steps the county will take in the next few weeks were pro­posed at the hear­ing by Mar­garet Gra­ham, the di­rec­tor of Loudoun’s Depart­ment of Men­tal Health, Sub­stance Abuse and Devel­op­men­tal Ser­vices, which over­sees the group home. They in­clude train­ing the group home staff on how to care for Scott.

“It has been our in­ten­tion from the be­gin­ning to get him to a point where he can be at the group home, and the group home staff are pre­pared to han­dle his needs as a pa­tient,” Rogers said.

“We’re go­ing to make sure his safety and care is para­mount,” he said. “The phys­i­cal lo­ca­tion is not as crit­i­cal as his safety.”

Scott’s rel­a­tives want him to re­turn to the group home, they said, be­cause he has formed re­la­tion­ships there and that is the home he knows.

“It is clear that the judge agreed that send­ing Alex home was the best thing for him, and her rul­ing showed thought­ful con­sid­er­a­tion of how to do that,” Whit­beck, the fam­ily’s at­tor­ney, said Satur­day. “If the county does not fol­low through on the re­quire­ments of the rul­ing, the judge has cleared the way for us to take this case back into court on an emer­gency ba­sis, and we most cer­tainly will.”

Scott was ad­mit­ted to Inova Loudoun Hospi­tal on March 31 for hav­ing low oxy­gen lev­els, ac­cord­ing to the com­plaint. Tu­nador, his sis­ter, said that she and her par­ents ex­pected that he would be dis­charged after a few days.

When it be­came clear that the group home was not plan­ning to take him back, Tu­nador turned to so­cial media to cat­a­logue Scott’s hospi­tal stay, us­ing the hash­tag #TakeAlexHome.

“Day 11,” Tu­nador wrote on Face­book on April 10. “I prom­ise you Alex, we are do­ing ev­ery­thing we can to get you out of the hospi­tal and back to your home.”

“Day 20,” she de­clared in a video. “We really are not much fur­ther.”

“Day 37,” she wrote Fri­day, “please keep shar­ing and send­ing emails. We have not been heard yet.”

Hours later, she learned of the judge’s de­ci­sion.

KATHERINE FREY/THE WASHINGTON POST

He­lena Tal­bot smiles at her son, Alex Scott, in his room at Inova Loudoun Hospi­tal in Lees­burg on April 20. He spent 38 days there.

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