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 鈥淓ffie鈥� Costas-Holly, 67, has advanced multiple sclerosis. She can鈥檛 walk or stand and relies on an overhead lift system to move from room to room in their house.
Effie wasn鈥檛 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鈥檚 needs 24/7. Her urologist didn鈥檛 have a lift system in his office and had told the couple it was safer to have Effie鈥檚 catheter changed regularly at home.
Holly wasn鈥檛 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鈥檚 home health services by Kathleen Holt, associate director of the Center for Medicare Advocacy.
If you鈥檙e told Medicare鈥檚 home health benefits have changed, don鈥檛 believe it: Coverage rules haven鈥檛 been altered and people are still entitled to the same types of services, Holt told the group. (For a complete description of Medicare鈥檚 home health benefit, click )
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鈥檚 urologist wasn鈥檛 consulted about a possible discharge from home health, doesn鈥檛 agree with this move and is willing to recertify Effie for ongoing home health services, Holt advised.
Craig and Effie Holly(Courtesy of Craig Holly)
Within hours, the agency reversed its decision and said Effie鈥檚 services would remain in place.
A Hartford HealthCare spokesman said he couldn鈥檛 comment on the situation, citing privacy laws. 鈥淥ur 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,鈥� he wrote in an email.
鈥淣o patients have had services reduced as a result of Medicare鈥檚 implementation of the PDGM program.鈥�
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.)
鈥淚f the therapist or the agency says that Medicare doesn鈥檛 cover a particular service any longer, that should raise red flags because Medicare hasn鈥檛 changed its benefits or clinical criteria for home health coverage,鈥� Falvey said.
Enlist your doctor鈥檚 help. Armed with this information, get in touch with the physician who ordered home health services for you.
鈥淵our physician should be aware if you feel you鈥檙e not getting the services you need,鈥� said Kara Gainer, director of regulatory affairs for the American Physical Therapy Association.
鈥淒octors should not be sitting on the sidelines; they should be advocating for their patients,鈥� 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鈥檙e 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 鈥淧atient Bill of Rights,鈥� with the names and phone numbers of people who can be contacted if difficulties arise. Contact the agency鈥檚 clinical supervisor, who should be listed here.
鈥淐all us and trigger a conversation,鈥� 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鈥檛 following Medicare鈥檚 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鈥檚 ombudsman. Unlike nursing homes, home health agencies don鈥檛 have designated long-term ombudsmen who represent patients鈥� interests. But you can contact 1-800-Medicare and ask a representative to submit an inquiry or complaint to the general , 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 鈥淣otice of Medicare non-coverage鈥� stating the date on which services will end, the reason for termination and how to file a 鈥渇ast appeal.鈥� (This notice must be delivered at least two days before services are due to end.) You have to request an 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.
鈥淎ll home health agencies are not alike鈥� and if one agency isn鈥檛 meeting your needs 鈥渃onsider shopping around,鈥� 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鈥檚 new home health payment system.
Among the things that patients have been told, mistakenly: 鈥淢edicare 鈥榗losed a loophole鈥� as of Jan. 1 so your care will no longer be provided after mid-January,鈥� 鈥淢edicare will no longer pay for more than one home health aide per week,鈥� and 鈥淲e aren鈥檛 paid sufficiently to continue your care,鈥� said Judith Stein, the center鈥檚 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 ) or the Medicare Rights Center (national help line: 800-333-4114) can help you understand what鈥檚 going on and potentially intervene on your behalf.
We鈥檙e eager to hear from readers about questions you鈥檇 like answered, problems you鈥檝e been having with your care and advice you need in dealing with the health care system. Visit to submit your requests or tips.