· Legislation
· Direct Care Worker Day
· Florida Freedom Initiative
ANCOR Hails Representatives Terry and Capps for Bill to buoy Wages for Long-Term Support Professionals
(Washington, DC – October 5, 2004) – For the first time, legislation has been introduced into Congress that would buoy wages for a group of our nation’s quiet heroes – Direct Support Professionals. U.S. Representatives Lee Terry (R-NE) and Lois Capps (D-CA) brought to center-stage the Direct Support Professional Fairness and Security Act of 2004 (H.R. 5197). This bipartisan legislation is designed to make funds available to states that would enable them to increase the inadequate wages paid to Direct Support Professionals (DSP) who, under the Medicaid program, provide supports to individuals with disabilities.
The legislation is a direct outcome of the ANCOR National Advocacy Campaign, a nationwide effort to improve wages and therefore the lives of hundreds of thousands of direct support professionals, their families and the people they support. “Wages matter and this bill takes a landmark step forward in raising the issue nationally!” exclaimed Dr. Renee Pietrangelo, CEO of ANCOR. “All of us at ANCOR appreciate the efforts of Representatives Terry and Capps in taking this major step in Congress. ANCOR believes that the introduction of The Direct Support Professional Fairness and Security Act prompts the serious national discussion and action that this issue warrants.
This bill will directly affect the lives of millions of people now and millions in the future.
There are more than 54 million Americans with disabilities—eight million of whom have mental retardation and other developmental disabilities—with nearly 14 million requiring long-term supports and services. These supports include personal assistance to meet the individual’s personal care and hygiene needs, habilitation, transportation, employment, meal preparation, housekeeping and other home management services.
The workers who provide intimate support are known by many job titles—but one thing in common is shared by all of them. They are the hands, voice and face of long-term support, the very core of our nation’s formal long-term supports system. A majority of these workers are female and often the sole breadwinner of their household. Although employed, the wages they earn keep many families impoverished.
“This crisis is real and it will worsen unless something is done to turn the tide. It is a real issue affecting real people in everyone’s community—and it is likely to affect all of us as we enter our sunset years,” declared Dr. Pietrangelo. This crisis is a result of several factors, including:
• Increased demand for long-term supports and services.
• A traditional labor supply not able to keep pace with demand.
• Jobs that cannot compete within today’s labor market.
One of the biggest challenges facing the United States in the 21st Century is assuring that individuals who have disabilities have the quality supports they need to lead productive and meaningful lives in the community. Yet, private providers who employ direct support professionals face turnover rates of between 40 and 77 percent; rely on fixed public funding to pay wages and benefits; and face a recruitment and retention crisis that threatens the entire stability and quality of our support system for people with disabilities as well as our nation’s fragile elders.
Over the past decade, both the dollar amount and percentage increase in hourly wage rates for these workers are far below that of comparable job categories as well as the national minimum wage.
For example, wages for Personal and Home Care Aides—the Department of Labor’s occupational category that is the proxy for direct support professionals—increased only $0.82 from 1992-2000 versus $3.16 and $4.11 for public direct support workers and fast food workers respectively.
A 2003 national report found that the overall average wage for direct support professionals employed by private providers of community services for persons with mental retardation and developmental disabilities was $8.68 per hour, while the average reported wage for state workers was $11.76 per hour.
Unlike other sectors of the private market, the formal long-term supports system is almost entirely dependent upon public financing—particularly Medicaid funding—that not only underfunds the true costs of services, but also varies considerably. In addition, private providers cannot pass along the cost of increasing the wages and benefits for their direct support professionals to their customers—people with disabilities. And, states have faced their worst economic conditions in decades, reducing their ability to add to Medicaid funding.
H.R. 5197 offers hope to hundreds of thousands of Direct Support Professionals and the millions who rely on their support day in and day out to live productive, and independent lives in their community. ANCOR pledges to continue its advocacy work to ensure passage of this legislation and a better life for America’s Direct Support Professionals and the people they support.
ANCOR represents and advocates on behalf of the more than 850 providers of services and supports for 385,000 Americans with disabilities. For more details about H.R. 5197, visit http://www.supportnac.org/images/PressReleaseLegBill9-21-04.PDF. To get more information on the ANCOR National Advocacy Campaign, visit www.supportnac.org and sign a petition to urge state officials to constructively address the issues of direct support staff wages, recruitment and retention. To view the study “The Growing Crisis in Recruiting and Retaining the Direct Support Workforce,” visit http://www.ancor.org/dev/Activities/NAC/Final-Report_Revised121602.pdf.
AZ Gov Proclaims “Direct Care Worker Appreciation Day”
(AZ) On August 23rd of 2004, the Governor of Arizona, Janet Napolitano, officially proclaimed Friday, September 17, 2004 as “Direct Care Worker Appreciation Day.” What exactly does that mean? Well, in an effort to thank direct care workers for the role they play in the lives of people with disabilities, the state asked that all employers of direct care workers dedicate September 17th for special recognition activities.
View letter from the Arizona Department of Economic Security here.
Florida Freedom Initiative
The Florida Freedom Initiative is a project aimed at promoting the concept of consumer-directed care. The U.S. Department of Health and Human Services' Developmental Disabilities Program Office, in partnership with the Agency for Health Care Administration, will request a Social Security waiver as well as an expansion of the Independence Plus Medicaid waiver to cover about 1,500 individuals. The move is intended to increase individuals' control of public funds for long-term support needs, and promote employment, home ownership and financial independence without jeopardizing their eligibility for both Medicaid and Social Security Income benefits.
Why is it so important? People all over the country are looking to Florida and this project. They’re hoping it will be successful in Florida so they will be able to do the same thing where they are. Many people want to change the system to support people to take charge of their own futures. Many people are dissatisfied with the system, but Florida is actually taking steps to change it and make it better!
Waiting lists are growing. Many people are being added to the rolls, but there are shrinking dollars to serve the ones that are already getting services. In 2000, nearly 700,000 people with developmental disabilities nationally lived at home with a family caregiver over the age of 60. Almost one million others lived with a caregiver between the ages of 41-59. When the caregivers can no longer take care of people, there will be an enormous flood of people needing support. As the aging population grows to 20% of the overall population, the adult children who take care of them only grows by 7%. There will not be enough family members to take care of all the elderly and people with disabilities.
Many states are redefining eligibility and forcing people off Medicaid as dollars shrink. As more people need Medicaid (and there are less dollars), there will be more competition to see who is more needy. Programs and services may be reduced or eliminated. The workforce that is needed to provide care and support to people is shrinking as the percentage of elderly people increases at a greater rate than young people coming up to take care of them.
In many case, people have NO expectations for people with disabilities. Many people do not believe people with disabilities can work and support themselves. Many of our employment programs have had very limited success in helping people to obtain gainful employment. Many people think that if you have a disability you should live with other people like you and get “special” services. Society has not been able to experience the gifts and talents of people with disabilities because they have been segregated and isolated from the community.
People with disabilities will not have a chance for a good future until we start using the same standards for quality of life that other Americans have for their lives. The system has many disincentives that keep people leery of working and earning much money. People feel that if they earn money it will be taken away from them. Current programs and services rarely move people on to more independent ways of living. People get stuck in programs for years. SSI rules make people feel that if they earn money it will only be taken away from them so why work? People are also afraid they will lose their health benefits if they earn too much money. The system is complicated and confusing causing, a fear of doing anything new or different--like starting your own business. People are afraid they will be kicked off SSI and Medicaid, and it will be hard to get back on if they stop earning money.
The SSI system doesn’t allow people to save enough money to get some of the things that would help them to be more independent in the long term. People can’t save to buy a house, or start a business, or buy their own transportation, or go on for further education. Not having these things keeps people poor and dependent on the system for a place to live, spending money and transportation. There is little hope for people to break out of the cycle of poverty.
If people understand how important it is to use the funding to create a meaningful life, they will have a better chance to break free of poverty and dependence. People have the opportunity to use their funding to build a circle of support around them that will provide natural support—support that will be there for them no matter what is happening in the system. FFI frees people up from some of the rules that take money away from people when they
start earning income. It also protects their health benefits longer and gives them more security from losing SSI and Medicaid as they earn more money. It gives them a bigger cushion until the time when they are earning enough to support themselves adequately and don’t need the benefits any longer.
It helps people to get “banked”—setting up accounts at neighborhood banks or credit unions. This has enormous benefits other than just having the account. People with bank accounts have more status and have more opportunities to borrow for home loans and business investments. It also allows them to save money to acquire assets that will give them freedom—owning their own home, owning their own car (even if they don’t drive), saving for college or other education expenses, starting their own business. The Florida Freedom Initiative is an important step in helping to raise the bar for what we think is possible for people with disabilities. It will say to them that the American dream of having your own home, starting your own business, going to college and having your own car is possible for them as well.
It will be a big step toward their ability to have the life, liberty and the pursuit of happiness guaranteed by the Constitution but denied them for so long.
Information taken and used with permission from the Center for Self Determination website (Florida page)
