Craig Holly was determined to fight when the home health agency caring for his wife decided to cut off services Jan. 18.
The reason he was given by an agency nurse? His wife was disabled but stable, and Medicare was changing its payment system for home health.
Euphrosyne "Effie" Costas-Holly, 67, has advanced multiple sclerosis. She can't walk or stand and relies on an overhead lift system to move from room to room in their house.
Effie wasn't receiving a lot of care: just two visits every week from aides who gave her a bath, and one visit every two weeks from a nurse who evaluated her and changed her suprapubic catheter, a device that drains urine from a tube inserted in the abdomen.
But even that little bit helped. Holly, 71, has a bad back and is responsible for his wife's needs 24/7. Her urologist didn't have a lift system in his office and had told the couple it was safer to have Effie's catheter changed regularly at home.
Holly wasn't sure what to do. Call his congressman and lodge a complaint? Write a letter to the director of the home health agency owned and operated by Hartford HealthCare Corp., one of the largest health care systems in Connecticut?
Things snapped into focus when Holly attended a late November presentation about Medicare's home health services by Kathleen Holt, associate director of the Center for Medicare Advocacy.
If you're told Medicare's home health benefits have changed, don't believe it: Coverage rules haven't been altered and people are still entitled to the same types of services, Holt told the group. (For a complete description of Medicare's home health benefit, click here.)
All that has changed is how Medicare pays agencies under a new system known as the Patient-Driven Groupings Model (PDGM). This system applies to home health services for older adults with original Medicare. Managed-care-style Medicare Advantage plans, which serve about one-third of Medicare beneficiaries, have their own rules.
Under PDGM, agencies are paid higher rates for patients who need complex nursing care and less for people with long-term chronic conditions who need physical, occupational or speech therapy.
Holly got lucky. When he reached out to Holt, she suggested points to bring up with the agency. Tell them your wife's urologist wasn't consulted about a possible discharge from home health, doesn't agree with this move and is willing to recertify Effie for ongoing home health services, Holt advised.
Within hours, the agency reversed its decision and said Effie's services would remain in place.
A Hartford HealthCare spokesman said he couldn't comment on the situation, citing privacy laws. "Our goal is to continue to provide the right care at the right place at the right time with the orders reflecting the specific treatment goals and medical needs of each patient," he wrote in an email.
"No patients have had services reduced as a result of Medicare's implementation of the PDGM program."
But therapists, home health agencies and association leaders say that patients across the country are being told they no longer qualify for certain services (such as vitamin B12 injections or suprapubic catheter changes) or that services have to be cut back or discontinued.
What should you do if this happens to you? Experts have several suggestions:
Get as much information as possible. If your agency says you no longer need services, ask your nurse or therapist what criteria you no longer meet, said Jason Falvey, a physical therapist and postdoctoral research fellow in the geriatrics division at Yale School of Medicine.
Does the agency think skilled services are no longer necessary and that a family member can now provide all needed care? Does it believe the person receiving care is no longer homebound? (To receive Medicare home health services, a person must be homebound and in need of intermittent skilled nursing or therapy services.)
"If the therapist or the agency says that Medicare doesn't cover a particular service any longer, that should raise red flags because Medicare hasn't changed its benefits or clinical criteria for home health coverage," Falvey said.
Enlist your doctor's help. Armed with this information, get in touch with the physician who ordered home health services for you.
"Your physician should be aware if you feel you're not getting the services you need," said Kara Gainer, director of regulatory affairs for the American Physical Therapy Association.
"Doctors should not be sitting on the sidelines; they should be advocating for their patients," said William Dombi, president of the National Association for Home Care and Hospice.
Take it up the chain of command. Meanwhile, let people at the home health agency know that you're contesting any decision to reduce or terminate services.
When someone begins home health services, an agency is required to give them a sheet, known as the "Patient Bill of Rights," with the names and phone numbers of people who can be contacted if difficulties arise. Contact the agency's clinical supervisor, who should be listed here.
"Call us and trigger a conversation," said Bud Langham, chief strategy and innovation officer at Encompass Health, which provides home health services to 45,000 patients in 33 states.
Also, contact the organization in your state that oversees home health agencies and let them know you believe your agency isn't following Medicare's rules, said Sharmila Sandhu, vice president of regulatory affairs for the American Occupational Therapy Association. This should be among the numbers listed on the bills of rights sheet.
Contact Medicare's ombudsman. Unlike nursing homes, home health agencies don't have designated long-term ombudsmen who represent patients' interests. But you can contact 1-800-Medicare and ask a representative to submit an inquiry or complaint to the general Medicare ombudsman, a spokesman for the Centers for Medicare & Medicaid Services said. The ombudsman is tasked with looking into disputes brought to its attention.
File an expedited appeal. If a home health agency plans to discontinue services altogether, staff are required to give you a "Notice of Medicare non-coverage" stating the date on which services will end, the reason for termination and how to file a "fast appeal." (This notice must be delivered at least two days before services are due to end.) You have to request an expedited appeal by noon of the day after you receive this notice.
A Medicare Quality Improvement Organization will handle the appeal, review your medical information and generally get back to you within three days. In the meantime, your home health agency is obligated to continue providing services.
Shop around. Multiple home health agencies operate in many areas. Some may be for-profit, others not-for-profit.
"All home health agencies are not alike" and if one agency isn't meeting your needs "consider shopping around," Dombi said. While this may not be possible in smaller towns or rural areas, in urban areas many choices are typically available.
Contact an advocate. The Center for Medicare Advocacy has been hearing from patients who are being given all kinds of misinformation related to Medicare's new home health payment system.
Among the things that patients have been told, mistakenly: "Medicare 'closed a loophole' as of Jan. 1 so your care will no longer be provided after mid-January," "Medicare will no longer pay for more than one home health aide per week," and "We aren't paid sufficiently to continue your care," said Judith Stein, the center's executive director.
Some agencies may not understand the changes that Medicare is implementing; confusion is widespread. Advocates such as the Center for Medicare Advocacy (contact them at here) or the Medicare Rights Center (national help line: 800-333-4114) can help you understand what's going on and potentially intervene on your behalf.
We're eager to hear from readers about questions you'd like answered, problems you've been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.
This article was reprinted from khn.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.