Frequently Asked Questions/Answers Regarding Home Care from the Consumer Attendant Workforce Steering Committee
Frequently Asked Questions/Answers Regarding Home Care from the Consumer Attendant Workforce Steering Committee
To: Steering Committee members, Centers for Independent Living, Consumer-Employers, Direct Care Attendants, Associates
From: Tom Earle, CEO Liberty Resources, on behalf of the Steering Committee on Worker and Consumer-Employer Issues in Pennsylvania
Re: People With Disabilities, Seniors, and Direct Care Workers: Standing Together for Home Care
To whom this may concern:
This document covers some frequently asked questions that people with disabilities, seniors, and workers have asked about ongoing conversations on the future of home care in Pennsylvania. Much misinformation has been distributed by those who may not have a vested interest in our communities speaking for ourselves. We hope that this document, sent by me on behalf of the Steering Committee on Worker and Consumer-Employer Issues in Pennsylvania clarifies our vision for a better future for consumer-employers and direct care workers alike.
Tom Earle
CEO, Liberty Resources
"The direct care workers of Pennsylvania are fighting alongside seniors and people with disabilities. We need to improve the quality of our direct care jobs, because consumers have the right to be independent, and we want to do everything we can to make that happen."
-- Carol Jones, Home Care Attendant for 11 years
Thousands of Pennsylvanians depend on home care and direct care workers to keep their independence in their communities. We're working together to bring more direct care to more Pennsylvania families.
Q: What is the crisis in long term care in Pennsylvania?
There is a big crisis in long term care. With our diverse needs, we have the right to receive the services we need to stay independent - in our homes and communities - not just in nursing homes.
But the money our state spends on our long term care is out of balance. Over 80% of Pennsylvania's long term care dollars go to nursing homes - rather than to the home based direct care services we need and deserve. A recent Pennsylvania Office of Long Term Living survey showed that 92% of Pennsylvanians would like to choose to stay at home to receive their long term care. We have to balance this system now - because by 2020, over 20% of Pennsylvanians will be over 65 years old - and the over-85 population will have increased by 52%.
And there's another crisis - creating a reliable and retainable workforce that can serve the growing need of seniors and people with disabilities. A lack of healthcare benefits, optional training, and fair wages keep direct care workers under constant stress - causing high turnover for consumers. The status quo is not an option - we need to solve this problem, and preserve and protect the consumer directed model of direct care.
Q: Who is helping to bring Pennsylvania to a solution?
For decades, Pennsylvania advocates and workers have looked to state leaders and planning groups to address this crisis in a meaningful way. They have been sorely disappointed. There has been essentially no improvement in conditions for the direct care workforce for almost three decades. Direct care workers themselves are now ready to become the advocates for their own cause. Direct care workers trust consumer employers as their partners in finding a solution, and making it happen.
A committee of people with disabilities, seniors, and leading advocates has come together to support the efforts of the direct care workers and consumer employers. Under the guidance of Secretary of Labor and Industry Sandi Vito, this committee is crafting a plan that would protect and preserve the right of consumer employers to manage and control their attendants - while bringing the direct care workforce out of poverty.
This is the change that we deserve. To expand the home care services people want, we need a winning coalition to work together to make home care a better option for workers and consumers.
Q: If we don't improve home care, will Pennsylvania's consumers and workers get what they need?
Without the funding necessary to support the workforce that consumer employerss need to stay independent at home, more and more Pennsylvanians will find themselves in nursing homes, rather than in their own homes. We need to work together to rebalance long term care funding, and to make sure that the workforce consumers need is retainable, reliable, and ready with the skills they need.
Q: What exactly can we do to address these problems?
Leaders in the Commonwealth want to set up an initiative that will help to solve several critical problems facing people who use services and caregivers by:
§ protecting and supporting the strong relationship between direct care workers and consumer employers
§ connecting consumer employers to qualified caregivers through a comprehensive registry
§ providing back-up services so those needing direct care aren't ever left without services
§ giving caregivers the support and training they may need to do the job they love
§ allowing caregivers to come together for better wages and benefits, so they can stay on the job
This initiative is for consumer employers who want to direct their own workers in the ‘consumer-directed model'. It is important to note that this initiative would never interfere with the consumers' right to choose, interview, hire, train, schedule, or dismiss their worker.
Q: Have new initiatives on direct care been tried in other states?
Yes - different models are working for consumer employers and direct care workers in California, Washington, Oregon, Michigan, and Massachusetts. Academic studies of wages and benefits in home care programs in parts of California found that, as their initiative developed:
§ Workforce turnover fell 57% over a five-year period.
§ The supply of workers increased by 54%
§ People who receive direct care services reported greater satisfaction with their care and their worker, following the wage and benefit improvements.
States which have made great strides towards rebalancing their systems -- like Oregon and Washington - use these workforce initiatives to strengthen workers' supports as home care grows.
We know that these models can't work in Pennsylvania without careful examination and revision for consideration in the unique environment in Pennsylvania - where we have a long history of consumer control. In Pennsylvania, consumer employers and direct care workers are now collaborating - designing how concepts from other states can be used in Pennsylvania, to bring us the same benefits.
Q: Where will Pennsylvania get the money to support this direct care workforce initiative?
Pennsylvania taxpayers spend approximately $60,000 a year or more to put someone into a nursing home - while it costs $20,000 or less to keep someone in their own home, and the community they love.
When other states set up similar initiatives, they brought millions of dollars into home and community based services. Washington State has increased funding for home and community based services by 40%, since implementing their workforce initiative in 2000. Since establishing their workforce initiative in 2001, Oregon has won a 72% increase in funding.
But they only rebalanced their systems, and won more funding for home care, by working together. The time is now to make this winning coalition a reality in Pennsylvania.
Pennsylvania has publicly and contractually committed to shifting money from institutional care to community care through the "money follows the person" initiative. Now, consumer employers and direct care workers combined will create the political environment necessary to bring about the promised change.
Q: Is this just about the government putting Pennsylvania's home care agencies out of business?
No. In other states, home care agencies continue to flourish when the state makes it possible to expand the consumer-directed model. Many consumers use both models at different times in their lives, or even at different times of the day.
Q: Doesn't this just add an extra layer of bureaucracy to the long term care system?
No. Workforce initiatives like this make hiring a friend, a stranger, or a neighbor as your direct care aide a snap. By providing health care, benefits, and a living wage to workers; and providing back-up services to consumer employers, paperwork is cut down and quality of life goes up. Plus, with the money we save, more consumer employers can get care and more Pennsylvanians can participate in this meaningful work. It's a win for everybody.
Q: As a consumer employer, will this impact my independence/choice of attendant/freedom in any way?
No. The purpose of this initiative is to make it easier for you to choose, hire, and direct your caregiver, and to give you more choices and independence. You can hire your neighbor, family member, or friend - while also depending on a list of back-up direct care attendants who can fill in gaps in care or step up when you have an emergency. You will continue to hire, fire, train and schedule your caregivers so that support is given how and when you want it.
Q: So who opposes efforts to improve the home care workforce and expand consumer directed options of care?
Unfortunately, there will always be individuals and organizations who don't believe that the people who need services can manage their own care, just as there will always be individuals and organizations who do not believe that direct care workers should have the right to advocate collectively for themselves, and their clients.
Pennsylvania must create a consumer-directed and consumer-driven system of direct care that brings the voice of consumers to the bargaining table. We should not let self-serving and uninformed opposition prevent us from empowering workers and consumers. We must meet the needs of the future, while shifting away from nursing home care. We believe there is hope with the efforts underway by the Department of Labor and Industry - now that direct care workers and consumer employers are at the planning table.