CalPACE Supports Budget Measures to Boost Care Program for Frail Elderly

June 15, 2016 /PRNewswire/ -- Among various health care spending priorities and policy changes, the budget the Legislature sends to Governor Brown this week contains measures designed to expand the Program of all-Inclusive Care for the Elderly (PACE), an important care program for low-income frail seniors.

"We appreciate the administration's willingness to modernize PACE, particularly the payment and regulatory aspects," said California PACE Association (CalPACE) Board Chair Linda Trowbridge.

"If structured appropriately, the legislation will allow PACE to expand and serve additional older adults and frail seniors who want to live independently."

Established in the 1970s in San Francisco as a novel way of keeping frail seniors living in the community as long as possible, PACE provides and coordinates an array of medical, social, and long-term care services and supports to help keep frail seniors out of hospitals and nursing facilities. Eleven PACE organizations currently serve nearly 6,000 seniors statewide in 12 counties.

While demand for the program has been growing, outdated payment and regulatory systems have prevented the program from reaching its full potential. 

Payments for PACE providers are tied to costs incurred in the state's fee-for-service Medi-Cal program, which is rapidly shrinking due to the growing use of managed-care plans to deliver services for beneficiaries. Disparities in rates and questions about the adequacy of the rates have plagued the program for years. The program operates under a complicated network of federal and state requirements that necessitate lengthy approval processes for both new and expanded programs.

Recognizing this, the Brown administration introduced legislation as part of its 2016-17 budget proposal in January to revamp the PACE reimbursement structure and create additional regulatory flexibility for the program. 

Under the legislation, payments would be based on the actual costs of serving beneficiaries with a goal of providing more accurate and fair payments and aligning the payment methodology more closely with the methods the state uses to pay managed-care plans. 

The legislation also requires the state to seek greater regulatory flexibility for PACE from the federal Centers for Medicare and Medicaid Services for operational aspects of PACE.

These include the make-up and operation of PACE interdisciplinary care teams, the programs' ability to contract for services with community-based physicians and other senior service providers, and the ability to market PACE services.

Assuming the new rate methodology is approved by the federal government, a current cap on the number of PACE organizations that can operate in the state would be lifted and, for the first time, for-profit organizations would be allowed operate PACE programs, bringing state law into conformity with recent federal regulatory changes.

Both provisions are expected to increase the number of programs as well as the geographic areas served by PACE.

In response to requests from PACE organizations, the final legislation requires the new payment methodology to take into account the unique features of PACE, including its use of dedicated care centers to deliver and coordinate care. 

In addition, the legislation contains provisions to ensure the payment methodology accounts for high-cost conditions, such as Hepatitis C, recognizes the higher costs of start-up programs, and mitigates financial impacts on PACE programs during the transition to the new rate methodology. 

In conjunction with the legislation, the state has committed to further streamlining the application process for new and expanding programs, including the use of a new electronic application process and providing concurrent review of applications by the state and federal governments, which is expected to speed up the review of applications.

"We are grateful the Department of Health Care Services has worked with PACE providers on the issues and concerns we've put forward," noted CalPACE Chief Executive Officer Peter Hansel. "This is a win-win for the state and PACE and, most importantly, for the individuals the programs serve."

CalPACE is dedicated to the expansion of comprehensive healthcare services to seniors with chronic care needs through PACE. Through education and advocacy, CalPACE members strive to support, maintain and safeguard the PACE model and promote high-quality healthcare services to California's seniors.

A New Challenge for Caregivers: The Internet

As people age, how do they manage their online information?

Newswise, June 1, 2016. --- What should caregivers do when their loved one is checking in on social media at the bank, essentially announcing their whereabouts? What if they are posting too often or don’t remember making online purchases?

In the age of online living, caregivers lack support, resources and guidelines to help the vulnerable people who rely on them, according to an initial study, presented at the Association for Computing Machinery Human Computer Interaction (ACM-CHI) conference in San Jose, California.

The study is one of the first to examine the role of caregivers in the online lives of adults with cognitive impairments from Alzheimer’s disease and other conditions.

 In a world where many everyday activities have moved online, caregivers face a new challenge: finding a balance between autonomy and protection of care recipients.

“We want people to stay independent and engaged online, but current online systems make it difficult to help people in a way that empowers them without reducing their access,” said lead researcher Anne Marie Piper, assistant professor in the department of communication studies at Northwestern’s School of Communication.

“E-mail and social media sites aren’t designed to have a caregiver come alongside someone with cognitive impairments and help them stay active online.”

The researchers used focus groups consisting of 20 people informally caring for loved ones with Alzheimer’s, dementia and other brain-related conditions.

They detailed four main ways caregivers currently help people with cognitive impairments use the Internet -- “guiding, stimulating, connecting, and protecting,” with guidelines about how to improve those dynamics.

Caregivers could set up family accounts to support home computer use among family members. They also should learn how to recognize when vulnerability may be transitional, such as a gradual recovery after a stroke or a progression from early to late stage dementia.

Finally, the researchers recommended implementing a system that would allow caregivers to detect risky online situations.

For example, if a password or credit card were disclosed, a transaction would be held for review by the primary caregiver. These ideas, however, raise new ethical questions about who has control over a person’s online life, Piper said.

“Technological caregiving is a new form of work,” Piper said. “We hear about the physical, financial and social stress of caregiving, but no one ever talks about the burden caregivers feel to keep people active online, which we feel is a fundamental part of participating in society.”

According to the study, caregivers support online activity in the following ways:

Guiding: Caregivers may help someone type words into a search engine or operate a mouse. Even previously tech-savvy care recipients may need to re-learn how to use a specific technology.

“What’s challenging is that cognitive impairment is dynamic, and an individual’s needs may shift day-to-day or even moment-to-moment,” Piper said.

Stimulating: Social media can be a form of entertainment or stimulation. Caregivers play “brain games,” read news sites or view online photos of family members. “This interaction can help alleviate some of the burden of caregiving and provide a mutual source of enjoyment,” the researchers found. It also means caregivers have to spend time searching for content, identifying meaningful photos or videos and working it into a conversation.

Connecting: Facebook is a particularly important site for social support, caregivers said. In the study, they mentioned posting weekly updates on Facebook, Instagram, Blogger.com and Caregiver.com.

The ways caregivers post online information “introduces tensions around surrogacy, privacy and information sharing for vulnerable populations,” the researchers wrote.

Protecting: Caregivers use spam filters and set restrictive privacy settings to help avoid phishing and to block harmful websites, friend requests or potentially upsetting information.

They vigilantly watch for online financial threats. “The challenge is deciding when and under what circumstances a care recipient should not have access to credit card information required for online purchases,” the researchers wrote. “Sometimes it’s not until an adverse event like identity theft or overspending that the caregiver realizes they need to protect their care recipient online.”

Palliative Care Study Exposes Stigma, Calls for Rebranding to Improve Support for Patients, Caregivers

Newswise, April 21, 2016 – An ingrained stigma attached to the label “palliative care” among cancer patients, families and healthcare providers impedes earlier access to supportive care that improves quality of life, shows new research from Princess Margaret Cancer Centre published today in the Canadian Medical Association Journal (CMAJ).

The findings signal the need to rebrand palliative care, says principal investigator Dr. Camilla Zimmermann, to ensure the full spectrum of supportive care is offered to improve quality of life from the moment of diagnosis through the course of illness.

Dr. Zimmermann, Head, Palliative Care Program, UHN and Medical Director, Al Hertz Centre for Supportive and Palliative Care at the Princess Margaret, is a clinician-scientist who also holds the Rose Family Chair in Supportive Care, University of Toronto. She talks about her research at https://www.youtu.be/DerR61coVbc .

The researchers performed and analysed qualitative interviews with 48 patients with advanced cancers and 23 caregivers who had participated in an earlier randomized controlled study of 461 patients.

In that study, half the participants received early palliative care intervention in the outpatient clinic setting in addition to standard cancer care.

The other half received standard cancer care. Participants had advanced cancers (lung, gastrointestinal, genitourinary, breast and gynecological) and estimated survival of between 6-24 months. The published findings showed improved quality of life for the group that received early palliative care intervention (The Lancet, Feb. 19, 2014).

In the follow-up study, says Dr. Zimmermann, “initially, both groups perceived palliative care as synonymous with death; as care at the end of life in a setting where they would die, and in general as a frightening, anxiety-provoking thing they wanted to avoid.”

For the intervention group, however, the perception changed. “They began to see palliative care as relevant early in the course of their illness and as being beneficial to them by supporting them and improving their quality of life. “

But, she says, despite a positive experience, participants in the intervention group still felt stigmatized by the label palliative care. “Patients told us if palliative care were called something else, they wouldn’t feel so stigmatized.”

Dr. Zimmermann adds: “Importantly, the source of this stigma was mainly in the medical system because doctors and nurses had given the impression that palliative care was only end-of-life care. Another source of stigma was media. So I think those are two powerful institutions where we could effect change and give a different perception to families and caregivers about what palliative care really is.”

Although the World Health Organization broadened its definition of palliative care in 2002 to state “palliative care is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life”, definitions are inconsistent and confusing, says Dr. Zimmermann.

“Until there is a consistent definition of palliative care that is promoted by those referring patients and collaborating in their treatment, it is unreasonable to expect that patients and families will embrace a broadened conceptualisation of palliative care.”

And exactly what is palliative care? Dr. Zimmermann explains: “Palliative care improves quality of life in many different domains. Symptom control is an important domain; and this means managing pain, nausea, shortness of breath, sleep, depression and anxiety.

“Palliative care improves support for the family at home; it gives practical support for planning for the future, and also for how to get through every day. And it provides spiritual support.”

Dr. Zimmermann says: “So we have a branding issue and that’s the central message of this research. Although the definition has changed, we are not promoting it in the right way in the health care system.

“We need to do is promote the message and do so in actions as well as words that palliative care is supportive care that improves quality of life throughout the course of illness. It is not something to be afraid of or that is stigmatizing, but is helpful even while patients are receiving life-prolonging therapies.”