Direct Care Personnel

UCP Testifies Before Senate on Health Insurance for Direct-Support Attendants

On July 24, 2001, UCP's Past President and Current Board Member James Stearns, Esq. testified before the U.S. Senate Governmental Affairs Subcommittee on Oversight of Government Management, Restructuring and the District of Columbia. Mr. Stearns addressed the issue of health insurance and other compensation for direct-support attendants serving people with disabilities.

Good afternoon, Chairman Durbin and Members of the Subcommittee, I am James Stearns, Esq., current Board Member and Past President of the United Cerebral Palsy Associations (UCP). United Cerebral Palsy Associations was founded in 1949 by the parents of children with cerebral palsy. UCP has evolved into one of the nation’s largest not-for-profit organizations serving people with disabilities through 115 affiliates in 43 states. I appreciate this opportunity to testify on the importance of health insurance and other compensation for direct-support attendants for people with disabilities. I have the condition of cerebral palsy, have spent time in a rehabilitation facility, and was helped significantly by direct care attendants.

Direct-support attendants are also called by a variety of other job titles, and the U.S. Department of Labor uses the category "personal and home care aide." But whatever their titles, they assist people with disabilities in daily activities such as eating, dressing, and using the bathroom. These attendants are truly essential to the ability of hundreds of thousands of people with disabilities to live as independently and productively as possible.

As advocates for people with disabilities, many local UCP affiliates provide direct-support attendant services. UCP has a fifty-year history of serving people with cerebral palsy, and today two-thirds of the people we serve have other types of disabilities. But there is a national crisis with these services today because Medicaid and other third-party programs are not keeping pace with the costs necessary to provide quality attendant services. And this crisis is getting worse.

The required number of personal care attendants is expected to grow from 256,000 in 1998 to 374,000 in 2006, according to the Labor Department. This is due to demographic factors such as a rapid rise in the number of elderly persons, as well as the moral and legal imperative to support people with disabilities in the most integrated setting appropriate to their needs. States are now attempting to comply with the Supreme Court's 1999 Olmstead decree requiring states to provide community supports for people with disabilities where appropriate.

Even with the current demand, however, UCP affiliates are unable to recruit and retain enough personal care attendants. These affiliates report aide job vacancy rates as high as 35%, and few are accepting new clients for attendant services. This means that thousands of people with disabilities are languishing in costly government-funded institutions, and thousands more are living at home with elderly parents who are increasingly unable to take care of them. This is a shocking waste of both human capital and federal tax dollars.

Why is there an attendant shortage? Medicaid and other third-party payers usually don't cover the necessary costs of employing attendants. Private health insurance seldom covers any attendant services, while Medicaid often pays very low rates. For instance, Medicaid attendant reimbursement rates were as low as $5.24 an hour in California in 1999, $6.25 in Maine and $6.50 in Michigan, according to a study funded by the federal Department of Health and Human Services (HHS).

From such low Medicaid fees, providers must try to pay not only attendants' wages but also employer payroll taxes, and recruitment, training and liability insurance and any health insurance costs. Some providers must use charitable contributions to subsidize aide services, but this means that those providers must cut other charitable services.

In view of these low payments it is not surprising that the national average wage for personal care attendants was $7.72 in 1999, according to the Labor Department. That equates to a full-time annual income of $16,060, which was $969 below the 1999 poverty rate for a family of four.

The average wage for personal care attendants also was 87 cents an hour less than that for nursing-home aides. Although we do not have more up to date statistics, there is no indication that attendants' wages have increased.

Most attendants are highly dedicated to the people they serve, but they cannot ignore the economic reality of low compensation. Indeed, compensation is a key factor in aide turnover, according to an HHS-funded California study last year. So it's not surprising that UCP affiliates have a turnover rate of approximately 100% per year for direct support workers, and other providers have similar rates.

UCP affiliates seek to provide the best possible attendant services, but attendants’ high turnover rate makes that inherently difficult. Even after extensive training, a new attendant initially will be unfamiliar with the needs of particular consumers. And high vacancy rates mean that consumers may not receive the optimal number of hours of service.

The role of these attendants is crucial to the well being of individuals with disabilities. If medications are not properly administered a person’s very life may be endangered.

Some of the things that an attendant needs to be trained for include, besides administering medicines, transferring and lifting, showering, dressing, feeding, catherizing, disability sensitivity, punctuality, general people skills and cooking.

I will give you just a few anecdotes from friends. One attendant mixed the peas with the applesauce because they did not seem to know any better. Another asked if he needed to turn on the stove in order to cook dinner. Another attendant, when asked to be on time, said, “find another attendant!” If the attendant does not show up on time, for many people with disabilities that means they cannot get out of bed, not even to take care of bathroom needs, and if the attendant’s tardiness makes the person late for work that person’s job can be put at risk.

Improper feeding methods can lead to choking and improper lifting may mean that the person with disabilities, who may already have frailties, is dropped. If the attendant hurts himself or herself through improper lifting, then the attendant can become suddenly unavailable to help their client. If an attendant is suddenly unavailable for any reason, their client’s ability to get out bed, go to work and keep appointments may become impossible.

An attendant may need to drive a car, travel with their client and know what to do in emergency situations. In addition, personal security is an issue with high turnover rates. Caregivers may have a key to the home and the car, access to bank accounts and the telephone. In the worst of all cases, the caregiver relationship can create a situation where the person with disabilities is vulnerable to abuse until they are able to get to a place of safety.

High turnover rates can also mean that the person with disabilities has to constantly retrain attendants. The training period means that everything takes longer and this has a ripple effect throughout the day of the person with disabilities,

High turnover and vacancies also mean that providers must spend relatively large amounts on recruitment and training costs, thus reducing funds available for aide compensation, thereby creating a cycle of further high turnover and vacancies.

Mr. Chairman, as you have noted, many aides lack health insurance, because providers cannot afford to buy insurance or to pay wages sufficient for aides to afford the full cost of a health plan. For instance, 45% of Los Angeles County home care aides lacked health coverage last year, while 60.6% of California personal care aides statewide lacked it in 1999.

Although millions of other low-income people also are uninsured, aides' lack of health coverage has two particularly serious consequences. First, people without insurance are less likely to obtain timely medical treatment. This leads to more serious conditions and thus more time absent from work. During such absences, it is not always possible to find a substitute aide. When no aide is available, people with disabilities may be unable to eat, take medicine, or use the bathroom for many hours. And even at best, aides' absences disrupt the lives of people with disabilities.

Second, when an aide has a communicable disease, delayed treatment increases the risk of transmitting that disease to people served by the aide. Many of those people already have poor health status due to disabilities, and so are at heightened risk of further health problems and even death. That also leads to increased public program costs for treating resultant medical problems of people with disabilities.

Mr. Chairman, UCP strongly supports your draft bill to provide state formula grants to offset all or part of the cost of caregivers' health insurance. We believe enactment of your bill is one of several crucial steps that should be taken immediately to prevent the imminent collapse of community-based aide services for people with disabilities.

Funding aides' health insurance is a cost-effective approach because it would reduce Medicaid costs for aide-transmitted diseases and for recipients' medical problems caused by aide absenteeism.

UCP believes additional steps also should be taken to solve the aide crisis. We support legislation to increase Medicaid aide reimbursement rates to a specified "target" amount such as the state's average state institutional aide wage rate. Under this approach, the added cost would be 100% funded through an enhanced federal Medicaid contribution.

We also support legislation creating a federal inter-agency Task Force to develop recommendations to Congress on potential ways in which the aide shortage can be reduced. We believe options for consideration should include improved training and job retention programs, immigration policy changes, and other approaches. Finally, we support a continued annual appropriation of $50 Million for HHS "RealChoice" grants available to states to develop infrastructure to support increased use of community personal-care aides. Infrastructure projects include approaches such as multi-provider aide training consortium and an aide course-completion credential accepted by all providers in a state.

In enacting the Ticket to Work legislation in 1999 Congress rightly recognized that to be employed people with disabilities needed to have access to health insurance through a Medicaid buy in. No less the same is true in regard to those aides who many of these same individuals rely on to prepare for work each day.

If we truly value and want to enhance the independence and productivity of individuals with significant disabilities, we must find ways to value those who make such independence and productivity possible, the direct care attendant.

Thank you very much for this opportunity to address what is probably the single most urgent topic facing people with disabilities today. I would be pleased to respond to any questions or comments.

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