Presentation to

Long Term Care Task Force

Workforce Development

Representative Melvin Neufeld, Chair

July 30th, 2003

Thank you for the opportunity to present to you today regarding issues of Long Term Care. I am Gina McDonald and I work for the Kansas Association of Centers for Independent Living (KACIL).

KACIL represents the 13 Centers for Independent Living (CIL’s) around the state. Our mission is to coordinate efforts within Kansas, the United States, and internationally to the extent that these efforts will further independent living for all. KACIL will advocate for the civil rights of Kansans with disabilities, regardless of age.

I was asked to come speak to you today about issues regarding personal care attendants for people with disabilities.

The issues are real and as the State population ages and more people live longer with disabilities, the availability of people who are willing to perform these tasks are decreasing.

Some of the information I will be presenting comes from a paper by Robin Stone, Dr.P.H. Dr. Stone works at the Institute for the Future of Aging Services. She presented this information to us at training in Parsons Kansas.

As we are all aware, there is a decreased availability of traditional care givers. Families don’t live in close geographic proximity. Those families who do still live close

have other responsibilities that prevent them from being full time care givers.

Adult family members are holding down full time jobs and caring for the rest of their family. Their time is very limited and caring for a disabled adult becomes difficult, if not impossible.

There continues to be a labor shortage for people willing to perform personal assistance services. Even with a softening economy, people are not aware of employment opportunities, or they choose other job options.

However, Dr. Stone’s research indicates that recruitment is only part of the problem. She believes, through her research that retention of employees is the major concern. There are very high turnover rates and vacancy rates.

The research seems to indicate that the reasons for high turnover don’t always have to do with wages and benefits alone. It appears that the role of the personal assistant has a great deal to do with the longevity on the job.

The management style of the employer or manager directly affects whether the worker wants to continue employment. Under self direction, the consumer themselves are, in many cases just learning to be employers themselves. But it does appear that when consumers have a choice of potential employees, there is more likelihood that a better match will occur and the likelihood of continued employment is greater.

In an article from the National Program on Self Determination Judith Snow writes that there are two essential qualities to make this relationship work effectively.

They are transparency and relationship.

The worker must accomplish tasks in a way that makes them transparent to the outside world. Judith Snow says that “A skilled personal assistant can perform his or her functions without overshadowing the contributions and personality of the person being assisted. When I am giving a speech to two thousand people, the audience remains unaware of the bathing, grooming, wheelchair maintenance, chauffeuring, and note taking that got me to the podium.”

The second important component is relationship. Ms. Snow says that “the personality, interests and skills of the assistant and the supported person must compliment each other. Each must bring a willingness to be with each other open themselves to each other, be honest, straightforward and respectful, and each must responsibly ensure that the leader leads. And the leader… must be the supported person.”

In most cases is no “career ladder” for people who are personal attendants. There is no opportunity under the current system in many states for a person to advance to another position.

Clearly, improving wages and benefits are methods which will increase the likelihood of finding and retaining employees.

In Kansas we have found through informal surveys that most Personal Assistants under the self directed program would prefer having more money per hour than health care benefits. However, when asked if they would like health care benefits that is not tied to a reduction in their hourly pay, most PA’s would prefer to have health care and other benefits.

In Kansas consumers using the self directed program are paying attendants an average wage of $7.17 per hour. Pay rages from the lowest starting wage at $5.50 per hour to the highest reported of $9.00 per hour. Some consumers working with their payroll agent build in raises based on job performance, but there was a cap of $9.00 per hour.

Only one CIL reported that they provide health care benefits as an option for consumers to offer to employees. The option is only available to full time employees.

Two other CIL’s reported that they used to offer health care benefits, but the insurance rates either became too high or the company dropped the coverage.

In addition to the above mentioned issues, these were reported from consumers and advocates in Kansas:

- Lack of reimbursement for travel. In rural areas it is not cost effective to provide care to more than one person because of the distance to travel with no reimbursement for those expenses.

- As a result of the above, not having enough hours to work. Unless one consumer has a plan of care with 40 hours per week or more, it is difficult to schedule working for more than one consumer.

- Delays in receiving paychecks because of pending claims, computer mistakes or other issues.

- Lack of opportunity for basic training information about independent living, information about employment. The problem is no pay for these activities.

- No pay built in for time to discuss issues with different PA’s who may be working with the same consumer.

- In some areas competition from other companies for entry level workers who pay much higher rates and/or provide benefits including but not limited to health care insurance, vacation, sick leave, retirement.

RECOMMENDATIONS:

1. The option to self direct services is an important one. We have seen greater success in retention of PA’s under this program. KACIL continues to support any efforts by the state to increase the availability for people with developmental disabilities to direct their care.

We are concerned that there appears to be an effort by the Department on Aging to restrict the ability for Seniors to direct their care under the Senior Care Act.

2. Research on other state solutions which have merit. For example, Direct Care Worker Associations and Public Authorities. (See attached handout).

3. Strategies to increase reimbursement for PA services. This should include not only increase in hourly pay, but also availability of vacation time, access to pay for training, meetings, and in some cases mileage reimbursement.

4. Study methods and make recommendations to make available Health Insurance through worker pools, state employee system or Medicaid.

5. Promote Personal Assistance Services as a career opportunity through technical schools, high schools or community colleges.

6. Develop means to market the need and opportunity for employment in the field.

Thank you for the opportunity to meet with you today. KACIL appreciates your interest in this most important subject.

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