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Caring for Sarah: The Picture In Illinois

It’s been a quiet start of the summer for Sarah, my mom. She’s getting used to the new wheelchair we got her for the times when she goes out of the house to doctors’ appointments, church or social occasions. The weather is warm, which means her tired bones don’t hurt as much. She loves summer.

During the peaceful summer days my mom loves to go her favorite chair in the living room, where it’s cooler, and read, take a nap, or watch TV. As her caregivers, my wife and I love this break from the normal hectic schedule of appointments, medications and consultations.

It’s a good time to reflect also on the many issues involved in caregiving. Just a few days ago, AARP released a nationwide scorecard on how all 50 states are doing regarding care for their older residents.

Illinois scores quite high – 15th across the nation, a jump from 23rd from a few years ago – when it comes to meeting the long-term care needs of older residents, says the report.

Once again, the value of caregiving plays a critical role in this picture. Unpaid family caregivers provide the bulk of care for older Illinoisans, partly because the cost of long-term care remains unaffordable for most middle income families. In Illinois, more than 2.14 million residents help their aging parents, spouses and other loved ones stay at home by providing assistance with daily chore, transportation, finances, as well as complex medical tasks. The value of this unpaid care totals about $18 billion!

So, with Illinois in the top 15 nationwide, should we celebrate? Not really! A lot more needs to be done.  For the first time the report included new quality  indicators, including length of stay in nursing homes and use of anti-psychotic drugs by nursing homes which raises serious concern about the quality of institutional care.

The reality is that the vast majority of older adults want to live independently at home as they age, and the State needs to do more to help make it happen. This is why AARP supported legislation that gives training to caregivers when their loved ones are discharged from hospitals. The bill still needs to be passed out of the General Assembly, something AARP will continue to push for during the upcoming veto session in December.



Just to give you a snapshot of how things could improve in Illinois, if the State raised its game to the level of the highest-performing state (by the way, that's Minnesota):

  • 59,317 more low- or moderate-income (<250% poverty) adults age 21+ with activity of daily living disabilities would be covered by Medicaid.
  • 5,593 more new users of Medicaid LTSS would first receive services in home and community based settings instead of nursing homes.
  • 19,067 nursing home residents with low care needs would instead be able to receive LTSS in the community.
  • 4,090 more people entering nursing homes would be able to return to the community within 100 days
  • 4,796 more people who have been in a nursing home for 90 days or more would be able to move back to the community.


You can look at the full, national report here, and explore how Illinois is ranked compared with other states.

The single strongest predictor of a state’s long-term care system is the reach of its Medicaid long-term care safety net.  That’s why AARP also fought to expand services provided at home and in the community, by shifting funds away from undesirable, low quality, and more expensive nursing home care.

It’s a lot to think about. I will continue looking into this issue, while I help my mom enjoy a peaceful, healthy and fun summer! If you have a question, comment, or story to share please do so in the comments box of this blog, or drop me a line at:





About AARP States
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