One Woman’s Quest to Mend a $450 Billion Industry: Family Caregiving

Family caregiver-turned-AARP advocate urges states to plug holes in long-term health care system.

Elaine Ryan is AARP"S the vice president of state advocacy and strategy integration for their government affairs department.   
National Journal
Ron Fournier
April 2, 2014, 5:22 p.m.

It was an op­por­tun­ity of a life­time for Elaine Ry­an. The na­tion’s largest seni­or-cit­izens lobby needed a vice pres­id­ent for state ad­vocacy in Janu­ary 2007, and Ry­an was sched­uled to in­ter­view for the po­s­i­tion. “AARP,” she said, “my dream job.” But life got in Ry­an’s way.

Her 86-year-old moth­er was dia­gnosed with a lung tu­mor and ad­mit­ted to an in­tens­ive-care unit in Lock­port, N.Y., near Buf­falo. Ry­an post­poned the in­ter­view, flew home from Wash­ing­ton, and watched “Ma” die. For years, Ry­an had been her moth­er’s un­of­fi­cial care­giver — or­gan­iz­ing teams of health care pro­fes­sion­als via count­less tele­phone calls from Wash­ing­ton and fly­ing to New York every oth­er week­end. After her moth­er’s death, Ry­an played a sim­il­ar role for her ail­ing fath­er, who passed away 18 months later at 92.

More than any­thing she’d done in her pro­fes­sion­al life, this made Ry­an an ex­pert on a half-tril­lion dol­lar hid­den in­dustry: fam­ily care­giv­ing. In 2009, ac­cord­ing to an AARP study, about 42.1 mil­lion Amer­ic­ans provided care for an adult fam­ily mem­ber at any giv­en point in time, and about 61.1 mil­lion provided care at some time dur­ing the year. The es­tim­ated eco­nom­ic value of their un­paid ser­vice was about $450 bil­lion in 2009, up from $375 bil­lion in 2007. As the U.S. pop­u­la­tion ages, those num­bers will bal­loon, which brings us back to Ry­an.

She ac­cep­ted the AARP job four months after her moth­er’s death and now heads the group’s 50-state ef­fort to pass le­gis­la­tion and reg­u­la­tions that help fam­ily care­givers fill massive gaps in the U.S. long-term health care sys­tem. One study shows that 90 per­cent of long-term care in the United States is provided by fam­ily care­givers.

Work­ing its way through sev­er­al state cap­it­als is le­gis­la­tion that re­quires hos­pit­als to identi­fy care­givers and provide them in­struc­tions on how to treat their fam­ily mem­ber at home. An­oth­er bill gives nurses more au­thor­ity to provide care, in­clud­ing writ­ing pre­scrip­tions, which saves care­givers and pa­tients time spent on doc­tor vis­its. Oth­ers would broaden ac­cess to res­pite care, sick leave, and job pro­tec­tion for people forced to take time off to care for a loved one.

More broadly, the AARP cam­paign may be a mod­el for how the United States mends its 20th-cen­tury so­cial safety net. The best patches will be re­l­at­ively cheap, in­tensely loc­al, and the res­ult of part­ner­ships between gov­ern­ment and non­gov­ern­ment­al en­tit­ies that identi­fy suc­cess­ful com­munity pro­grams and scale them up.

“It’s not about a big gov­ern­ment pro­gram. It’s not a bil­lion-dol­lar grant,” Ry­an said. “It’s about mak­ing the cur­rent sys­tem make sense. We need a sys­tem that fol­lows us through the aging pro­cess. Every­body doesn’t need everything, but there are simple things for people who want to live their lives.”

Things like the mech­an­ic­al lift that Ry­an bought for her fath­er so that he could ease Ma in and out of her bed. Be­fore Ry­an dis­covered there was a bet­ter al­tern­at­ive, her fath­er had a gruel­ing routine of as­sem­bling and dis­sem­bling a make­shift wheel­chair ramp with cinder blocks and Sheet­rock.

Things like the flex­ib­il­ity to take time off work, which AARP gave Ry­an. Oth­er em­ploy­ers are not so open-minded.

Things like a home. After rent­ing a two-story house for 45 years, Ry­an’s par­ents real­ized the stairs were too much. They were urged to move in­to a nurs­ing home, but in­stead bought a one-story home for $68,000 near Buf­falo and lived there for 10 years be­fore Ma passed away.

“People want to stay in their home as long as pos­sible as they age,” Ry­an said. “I can see that in dozens of polls I read and com­mis­sion, but I saw it for my­self: My par­ents were first-time home­buy­ers in their 80s. There is the in­ex­or­able pull of home.”

It’s a pull that we’ll all ex­per­i­ence — that is, if we’re able to live long enough. Ry­an is driv­en by both the memor­ies of her par­ents and her hopes for her own fu­ture, sign­posted by a bump­er stick­er she keeps in her AARP of­fice. It reads, “Long-Term Care: Fix It Be­fore I Need It.”

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