Young mom leaves Ga. to help her dis­abled son

Rome News-Tribune - - NEWS - By Andy Miller Geor­gia Health News

A sin­gle mom and her med­i­cally frag­ile son re­cently moved from Geor­gia to Colorado in a bid to gain more cov­er­age for his care.

The med­i­cal ben­e­fits un­der Colorado Med­i­caid have made the move worth­while.

“It’s like night and day,” Sarah Allen, the mother, said Mon­day of the cov­er­age op­tions in her new home state. “It’s a mas­sive dif­fer­ence.”

Allen, whose plight was fea­tured in an Au­gust GHN ar­ti­cle, says that now her son, Ai­dan, qual­i­fies un­der Colorado Med­i­caid for 24/7 nurs­ing care in the home.

While in Marietta, Allen had spent her days car­ing for Ai­dan, 3, all the while fac­ing the prospect of be­com­ing home­less.

Born pre­ma­turely with a mal­formed brain, Ai­dan has mul­ti­ple health con­di­tions, in­clud­ing cere­bral palsy, epilepsy, ob­struc­tive sleep ap­nea and cor­ti­cal vis­ual im­pair­ment. He also has en­larged ven­tri­cles, scar­ring on his brain, and a mild form of mi­cro­cephaly.

Ai­dan is fed through a tube 22 hours a day. He can’t sit up by him­self, and gets around with help from a wheel­chair.

It was an around-the­clock job for Allen to care for him.

She bat­tled for more nurs­ing hours for Ai­dan that would be cov­ered un­der the Geor­gia Med­i­caid pro­gram. And be­cause she had to care for Ai­dan con­stantly, she couldn’t have a job. They lived pri­mar­ily on Ai­dan’s So­cial Se­cu­rity in­come of $711 a month.

They were liv­ing in a house owned by a gen­er­ous friend, but that prop­erty was about to be sold, so they faced be­com­ing home­less this fall.

The two now live in a rental apart­ment in the Den­ver area. Af­ter the move, Ai­dan quickly qual­i­fied for Med­i­caid and for the ex­tended nurs­ing hours.

And un­der a Colorado Med­i­caid pro­gram, Allen said, she has the chance to earn an in­come as a cer­ti­fied nurs­ing as­sis­tant while car­ing for her son.

Med­i­caid pro­grams, run by the in­di­vid­ual states, can vary sig­nif­i­cantly on ben­e­fits, as well as on “waiver” pro­grams that can add more types of cov­er­age.

“Ev­ery state does some­thing dif­fer­ent with their Med­i­caid dol­lars,” said Nancy Caulfield, who runs Cham­pi­ons for Chil­dren’s Health­care, and is a nurse who has worked with med­i­cally frag­ile chil­dren. “Colorado is do­ing a great job get­ting th­ese sin­gle par­ents out of poverty and pay­ing them to care for their child.”

While in Geor­gia, Allen said, she re­searched Med­i­caid pro­grams and found that Colorado of­fered sev­eral waiver pro­grams for chil­dren. Mean­while, she started a crowd­fund­ing site that raised $17,000 in do­na­tions for her son. She said she used the money to pay for their trip and also for leas­ing the apart­ment for sev­eral months.

The move to Den­ver has not been with­out prob­lems.

A few days ago, Allen’s car was stolen, and it hasn’t been found. And she said she misses her friends back in Geor­gia.

She said she plans to at­tend a nurs­ing as­sis­tant pro­gram to ob­tain her cer­tifi­cate. Un­der a Colorado CNA pro­gram for par­ents, she can care for her son 8 hours a day and get paid an hourly wage for the work, she said. “We’re not go­ing to be home­less be­cause of the pay,” she said Mon­day.

Ben­e­fits vary by state

Allen’s sit­u­a­tion in Geor­gia was not much dif­fer­ent from that of other fam­i­lies with med­i­cally frag­ile chil­dren.

GHN re­ported in Au­gust that chil­dren with med­i­cal com­plex­ity (mul­ti­ple se­ri­ous is­sues) are one of the small­est but fastest-grow­ing pop­u­la­tions of chil­dren, ex­perts say. There are an es­ti­mated 400,000 such chil­dren in the na­tion, but they ac­count for as much as one-third of health care spend­ing for all chil­dren, ac­cord­ing to an is­sue brief from the Lu­cile Packard Foun­da­tion for Chil­dren’s Health.

Joe Sarra of the Geor­gia Ad­vo­cacy Of­fice, the pro­tec­tion and ad­vo­cacy or­ga­ni­za­tion for peo­ple with dis­abil­i­ties in the state, said Mon­day that fam­i­lies – es­pe­cially sin­gle par­ents — can face poverty when car­ing for chil­dren with spe­cial med­i­cal needs.

“Ai­dan’s story is so im­por­tant be­cause it shows other states have come up with work­able so­lu­tions for th­ese fam­i­lies,” Sarra said.

Allen’s move re­calls a sit­u­a­tion a few years ago when some Geor­gia fam­i­lies went to live in Colorado so their dis­abled chil­dren could get med­i­cal mar­i­juana. Geor­gia has since le­gal­ized med­i­cal mar­i­juana for cer­tain con­di­tions.

While in Geor­gia, Ai­dan re­ceived 28 hours of nurs­ing care in the home each week, paid for by Med­i­caid. The state, through an in­ter­me­di­ary or­ga­ni­za­tion, sought to re­duce that num­ber to eight hours. A physi­cian, though, pre­scribed the ad­di­tion of hours to what Ai­dan was get­ting.

The state agency that runs the Geor­gia Med­i­caid pro­gram, when asked about nurs­ing hours and Ai­dan’s sit­u­a­tion, said in a state­ment in Au­gust that the Geor­gia Pe­di­atric Pro­gram serves chil­dren who are med­i­cally frag­ile.

Fam­i­lies seek­ing skilled nurs­ing ser­vices are au­tho­rized nurs­ing hours “based on doc­u­mented med­i­cal ne­ces­sity,” said a Geor­gia De­part­ment of Com­mu­nity Health of­fi­cial.

The agency de­clined to com­ment Mon­day on the fam­ily’s move out of Geor­gia, say­ing that it can’t com­ment on in­di­vid­ual Med­i­caid mem­bers’ cases.

Colorado is ahead of many states in help­ing such fam­i­lies, said Ellen Caruso, di­rec­tor of gov­ern­ment af­fairs for the Home Care As­so­ci­a­tion of Colorado.

Un­der the par­ent pro­gram there, home health agen­cies pay the cer­ti­fied nurs­ing as­sis­tants who are car­ing for a fam­ily mem­ber.

The par­ent CNA pro­gram “helps a lot,” Caruso said. “It’s a great pro­gram.”

‘Ai­dan’s story is so im­por­tant be­cause it shows other states have come up with work­able so­lu­tions for th­ese fam­i­lies.’ Joe Sarra Geor­gia Ad­vo­cacy Of­fice

Geor­gia Health News, a non­profit 501(c)3 or­ga­ni­za­tion, tracks state med­i­cal is­sues on its web­site geor­gia­health­

Robin Rayne / ZUMA

Sarah Allen primes pump used to feed her son Ai­dan through tube di­rectly into stom­ach. He must have his high-calo­rie liq­uid food for 20 hours ev­ery day.

Robin Rayne / ZUMA

Sarah Allen, hold­ing her son Ai­dan, may soon be home­less be­cause the house where she lives will be sold, and she has lim­ited re­sources to find another home suit­able for a se­verely dis­abled child.

Robin Rayne / ZUMA

Sarah Allen en­cour­ages her son to en­joy a spe­cially-adapted swing in a nearby park. She wears this feed­ing tube pump in her back­pack.

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