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California’s 2011-12 state budget, signed by Governor Jerry Brown (D) on June 30, contains a provision that could automatically trigger a $100 million cut to the In-Home Supportive Services (IHSS) program at the start of 2012.

The final $86 billion budget projects that the state will receive an additional $4 billion in revenue by mid-December. If the anticipated revenue falls short — only $2 billion to $3 billion is realized — then the IHSS program cuts will take effect, according to the Sacramento Bee.

“IHSS advocates fear the revenue projections will not be met and that the likely impact on consumers will be severe,” said Donna Calame, executive director of the San Francisco IHSS Public Authority and PHI board member.

“Consumers have already sustained cuts in Medi-Cal and an increase in co-pays. About 85 percent have seen their Supplemental Security Income/State Supplementary Payment cut from $904 to $830 a month,” Calame said.

Services and Wages Would Be Cut

Services provided by IHSS would be reduced by 20 percent should the cuts be triggered, reports the Associated Press.

“Workers could experience up to a 20 percent pay cut,” Calame said, “and with a drop in work hours, lose their health care coverage.”

The IHSS program was already scaled back last February with a 3.6 percent cut in hours.

If there is a revenue shortfall at the end of the year, budgets will also be slashed at several other state-funded programs and services, including the California Department of Developmental Services, the state university and college system, and child care assistance.

California’s adult day health care program has already been slated for elimination by September 1.

– by Deane Beebe

Direct-care workers will be among the topics at the 2011 Aging in America conference this week in San Francisco.

PHI National Policy Director Steve Edelstein will be a panelist at three featured workshops:

• Stabilizing the Direct-Care Workforce: A Policy Discussion;
• New Careers for Older Workers in the New World of Health Care; and
• Workforce Issues for a Graying America.

The annual conference, held by the American Society on Aging, gathers professionals in the fields of eldercare, health care, education, and aging for four days of policy discussion and advocacy.

The Aging in America conference also features a public policy forum conducted by the National Council on Aging.

– by Matthew Ozga

The SCAN Foundation has released the first two curricula in a series designed to enhance the skills of California’s direct-care workforce, including “Strengthening Communication and Problem Solving Competencies,” which was designed by PHI.

Each of the curricula in the series employs adult learner-centered methods of teaching to enhance the learning of participants and improve the quality of care provided by the state’s 150,000-plus certified nursing assistants (CNAs) and home health aides.

“Strengthening Communication and Problem Solving Competencies,” a six-hour in-service training, “focuses on active listening and problem-solving skills, which are the building blocks of culture change” in long-term care facilities, said Peggy Powell, PHI National Director of Curriculum and Workforce Development. The PHI training supports the Centers for Medicare and Medicaid Services‘ (CMS) guidelines to provide more resident-centered care.

The six hour-long modules are:

• Introduction to Resident-Centered Care and Active Listening
• Active Listening: Paraphrasing
• Active Listening: Asking Open-Ended Questions
• Managing Emotions: Pulling Back
• The Exploring-Options Approach to Problem-Solving
• Giving Constructive Feedback

“The SCAN Foundation’s efforts to fund the development and dissemination of these adult learner-centered training curricula have resulted in an important resource to enhance direct-care worker caregiving competence,” Powell said.

“Although tailored to the California direct-care workforce, our curriculum can be adapted for direct-care workers in any state,” she continued.

Other Trainings

The other curriculum that is currently available is “Care at the End of Life,” which prepares direct-care staff to help residents and their families cope with death and dying.

Each of the trainings in the series is interactive, outcome-based, and designed to be taught in an in-service setting in a relatively short period of time. “Care at the End of Life,” for example, comprises three modules, each lasting roughly 15-20 minutes.

The SCAN Foundation will release another four curricula in the series:

• Dementia: Understanding and Responding to Behaviors;
• Strengthening Communication and Building Partnerships with Family Caregivers;
• Managing Pain in Older Adults; and
• Pills and Spills (which focuses on medication administration and falls prevention).

The development of the trainings was funded by a series of grants awarded by The SCAN Foundation in 2009. In addition to PHI, grant recipients included Aging Services of California; San Diego Hospice and the Institute of Palliative Medicine; the University of Southern California’s Schools of Gerontology and Pharmacy; and the University of California, Irvine’s Program in Geriatrics.

– by Matthew Ozga

Calif. state legislators at a demonstration against proposed IHSS cuts

California would face legal risks if proposed cuts to its In-Home Supportive Services (IHSS) program are enacted, according to a January 25 report (pdf) issued by the state’s nonpartisan Legislative Analyst’s Office (LAO).

The 2011-12 budget plan introduced by California Governor Jerry Brown (D) includes a 43 percent cut to the IHSS program to help close the state’s $25 billion budget gap.

Brown’s proposed cuts to IHSS would:

• reduce the hours of care for all consumers by about 8 percent;
• eliminate all domestic service hours — such as cooking, cleaning, and laundry — for consumers who live with another person; and
• require consumers to obtain a physician’s certificate stating that if they were to lose home care, they would require care in an institution.

Consumers who do not get a physician’s certificate would be dropped from the program.

The IHSS program provides home care, personal care, and/or transportation accompaniment to 456,000 low-income consumers who are elderly, blind, or living with a disability to help them remain safely in their homes instead of an institutional setting.

“Any time services are reduced or limited, we have to think about whether this puts recipients at risk of being institutionalized,” said Ginni Bella Navarre, an LAO analyst, in reference to the U.S. Supreme Court’s Olmstead decision. Federal law requires states to provide care in less-restrictive community settings rather than institutions when possible.

Advocates for the elderly and disabled rallied outside the California State Capitol on January 27 to oppose the proposed budget cuts, which would also eliminate state-funded Adult Day Health Care and Multipurpose Senior Services Programs.

“The state of the state is not just about balancing a budget. It means balancing priorities and lives fairly. The governor’s proposed cuts to In-Home Supportive Services and other health human services is not fair,” said Marty Omoto, director, California Disability Community Action Network.

State legislators from both sides of the aisle held a press conference in support of IHSS, emphasizing how IHSS is more cost-effective for the state than institutional care.

Public Services Are Crucial Link, Report Finds

To document how budget cuts would affect low-income elderly consumers who depend on these services to remain in their homes, the UCLA Center for Health Policy Research released a policy note in late January entitled “Holding On: Older Californians with Disabilities Rely on Public Services to Remain Independent.”

After a year of tracking 33 elderly consumers who have both Medicare and Medi-Cal and receive IHSS and other community care, the researchers found that these consumers

• depend on a variety of public programs
• have “fragile arrangements” of paid and unpaid help
• “barely manage to live safely in their homes” but want to maintain their independence and remain at home

The researchers report that public services are a “crucial link” in the support networks of these consumers.

They further point out that service cuts would undermine the ability of many older adults who depend on community-based services to remain safely at home.

The policy note was supported with a grant from The Scan Foundation.

More information on California’s direct-care workforce is available in PHI State Facts (pdf).

– by Deane Beebe

Sam and Maya Simpson

Kathryn Simpson has been determined to keep her 24-year-old son Sam out of an institution since he was just 15 months old and suffered brain damage while undergoing surgery for a congenital medical condition.

For Sam to be able to live at home, Kathryn, a single parent and soon-to-be mother of two, would have to give up her nursing career — and a nurse’s salary.

She became a paid family caregiver instead.

Despite the low, $4 per hour pay rate, Kathryn, a persistent and tireless advocate for her son, felt fortunate: she had gotten Sam into California’s In-Home Supportive Services (IHSS) program — the first baby to become a client.

A Full Day of Care

Kathryn has been an independent home care provider through the consumer-directed care program at the San Francisco IHSS Public Authority ever since. She is paid to provide and coordinate care for Sam, who she describes as “severely disabled and medically unstable.” Kathryn plans to be her son’s caregiver forever because “he would never survive an institution.”

She says that she “accepts poverty-level wages to keep Sam at home. I live very frugally so I don’t need public assistance. I have health care coverage through IHSS and my share [of the premium] is nominal.”

Today, Kathryn works over 9 hours a day every day for $10 per hour, making sure that Sam’s personal care, medical, therapeutic, social, emotional, educational, and recreational needs are met.

By day, Kathryn provides Sam with his respiratory treatments, administers his medication regime, and takes him to therapy appointments — physical, speech and language, hydro, or music, depending on the day of the week. She is responsible for bathing and dressing Sam, preparing his meals, helping him eat, and making sure that he is toileted.

“I am lucky there,” she says. “He is continent.”

Kathryn also oversees her son’s post-high-school “transition” program. “There are no community-based alternatives because Sam has both developmental and medical needs,” says Kathryn, who takes her son regularly to museums, the aquarium, a communications club, and other community outings.

“Sam is very social. Everyone knows him,” explained his mother.

Making It Work

At night, Kathryn hardly sleeps unless she has respite care. “Sam has significant seizures — often when he sleeps,” she explained. When he has a seizure, his mother maintains his air passages and provides medication as needed.

Through the Golden Gate Regional Center, Kathryn gets 25 hours a week of respite care from a friend who is a trained nurse. “She is a friend, so willing to accept a rate well below what she could make.”

“I am spread so thin but I make it work,” she says.

Kathryn is concerned that she does not give adequate time to her 21-year-old daughter Maya. “There are just not enough hours in a day. It’s a big sacrifice for Maya. I try not to think about it and just put one foot in front of another.”

An Investment of Love

Kathryn says that her job as a paid family caregiver did not require her to be a nurse. Yet with Sam’s significant medical needs, she thinks that her medical background may have been a factor in allowing her to be Sam’s home care provider.

“IHSS was not offered to parents 24 years ago, only institutionalization,” Kathryn says. “It is now a widely accepted practice to enroll babies and children who have developmental and medical needs into the San Francisco IHSS program, with family members as the caregivers.”

“Many parents take on this job and just learn along the way,” she said. “They have an investment of love in their child and just do it.”

“If you have the proper information and get the supports that are guaranteed to these young individuals by law, you can survive at home.”

– by Deane Beebe

National Family Caregivers Month

President Obama proclaimed November to be National Family Caregivers Month to “honor the millions of Americans who give endlessly of themselves to provide for the health and well-being of a beloved family member.”

This tradition began in 1997 when President Clinton first dedicated a full month of recognition to family caregivers.

PHI salutes Kathryn Simpson and all family caregivers — paid and unpaid — who make it possible for elders and people living with disabilities who need long-term services and supports, to live with dignity and as productively and independently as possible.

“It makes perfect sense to honor family caregivers,” said Donna Calame, executive director of the San Francisco In-Home Supportive Services (IHSS) Public Authority and PHI board member. “It also makes sense to pay family members for personal assistance they provide to a disabled family member when it helps keep the family unit together or delays and makes unnecessary more costly public institutional placement.”

“In a humane society, the stress of living with a disability would not be borne by the individual or affected family alone,” Calame said.

“In May, Congress approved paying family members who provide certain services to disabled returning vets from Iraq and Afghanistan. That is public policy that we should over time extend to all families,” she added.

Consumer-Directed Care

One model for delivery of home care and personal assistance services under public programs like the San Francisco IHSS Public Authority is the independent provider model — also known as consumer- or participant-directed care. In this model, which differs from an agency-based model, consumers or their representatives direct and control their services, including hiring, supervising, and dismissing their aides.

California (pdf) is one of 43 states that have a publicly funded consumer direction program. Yet in each state the consumer-directed options differ, and often vary by program within each state. Some states allow family members to be paid to provide care to their relatives.

Kathryn Simpson is a San Francisco-based independent provider who cares for her son Sam. She is a paid family caregiver.

– by Deane Beebe