Testimony to

decide what times they would receive services. Because the state had to schedule PA’s to go to different people’s homes, there was no flexibility in when consumers could get services. So if a PA came at 8:00 each evening to assist a consumer with getting undressed and ready for bed, that was when the consumer had to go to bed every night.

I don’t imagine most of us have that rigid a schedule. We probably don’t go to bed that early, and I would guess that some evenings we work late, go to parties or other gatherings which cause a change in routine. But under the system as it was, there was no opportunity for changes.

Consumers were very unhappy with the program. Many advocates worked together with Social and Rehabilitation Services and together we advocated for three bills.

Attachment A is an overview of the law and regulations that were developed as a result of legislation to enact the option for Self Direction.

The first Bill (see attachment B) would allow consumers to recruit, hire, train, supervise, pay and fire their own attendant.

This gave consumers the ability to choose who would come into their homes and perform task, and to train the PA to perform tasks the way the consumer wanted. But most important to consumers was that they could set their own schedule.

So if on Monday through Friday the consumer wanted to go to bed at 10:00, but on the weekend she/he wanted to stay up until midnight, they would work it out with THEIR employee.

Even more important was the consumer chose the employee who best fit their lifestyle and preferences, just as most of us do when hiring a babysitter, or housekeeper.

The second bill (see attachment C) was an exemption to the Nurse Practice Act, which would allow a non-medical attendant the ability, with permission from the consumer’s doctor or a registered nurse, to perform medical tasks that would otherwise be performed by the consumer if they didn’t have a disability.

For example, when my doctor prescribes medication, I take it myself. If my arms didn’t function, I could explain to a non-medical attendant what drugs to give me and when. Under the old system, a nurse would have to come and give me medications. The same would be true if I were checking my catheter, checking blood sugar, administering insulin shots and many other tasks.

This option greatly reduced the costs for plans of care because a non-medical attendant could perform tasks that were previously performed by a nurse. This has been a successful program since it began in 1991.

As the state submitted the request to change the waiver to allow for self-direction, Health Care Finance Administration (HCFA) accepted the proposal with one exception. They would not allow the consumers to pay the attendants directly. They required that the state set up payroll agents, and in fact at that time, they would not even allow us to use that term. We had to locate providers who would ensure that taxes were paid, PA’s were paid and assure the consumers overall health and safety.

We believed that the only entities whose mission was to ensure that consumers had control of their own choices were the Centers for Independent Living. So they were the natural choice to be the providers. We also allowed that Home Health Agencies would be providers under the law. It was the intention of both SRS and the advocates that those two entities would be the only providers.

We also had to pass another law (see attachment D), which added, into state statute the definition of a Center for Independent Living. That definition was placed under the definitions of who could provide Home Health Services in the state. It was done for that purpose; however, nowhere did it specifically get included in regulations that CIL’s and Home Health Agencies were the only entities to provide the service.

We also were aware that this program would be successful only when all the components were in place. Consumers would need assistance in learning to be employers. They would need assistance in learning how to recruit, and deal with problem employees. They would need support when backup plans failed. The CIL’s were and are willing to provide those supports, while still assuring that the consumer is making the choices.

The program was ready to go. There were a number of consumers who wanted to self-direct their services. However, SRS had no providers.

Most of the Home Health Agencies were getting funding from Medicare as well as Medicaid. Under Medicare rules, they were not allowed to send untrained staff to consumer’s homes. They had a whole training package that was required of all their employees. HB 2012 said the consumer would train, not the provider. So most Home Heath Agencies were unwilling to become providers.

The CIL’s were leery of becoming providers because of the many potential liabilities that faced them as they took on this program.

Who really is the employer if the CIL’s have to cut the checks? Who is responsible if the PA steals from the consumer, or if the consumer or PA gets hurt on the job? What would happen if payroll was due and money hadn’t come from the state due to glitches in billing? Who would be responsible to reimburse the state for payments made to PA’s when they really didn’t work the assigned hours?

After many meetings, the CIL’s were assured that they would be reimbursed adequately to deal with the potential liabilities.

Only one CIL was willing to take on the risk for providing services. The Topeka Independent Living Resource Center agreed to provide services statewide. Soon after, all the other CIL’s also agreed to become providers. As an association KACIL met with SRS and decided to allow consumers the ability to choose any CIL or Home Health agency in the state to use as their provider. That gave consumers the ability to “shop” for the best services to meet their needs. So, for example, if I lived in Topeka but thought that the CIL in Wichita would provide better overall services including potentially higher pay, I could choose them.

This option of the program is one of the best for consumers and PA’s. It brings us as close as possible to the Cash and Counseling programs that are now being modeled in different states.

A few years ago, a number of “mom and pop” shops opened up and said they would be providers. They were neither HHA’s nor CIL’s. Some did not pay taxes, most did not pay workers compensation and they provided no other service than to cut checks to the PA. So many consumers moved to those services because they were paying higher wages to PA’s.

Neither the State nor the advocates could find regulations that specified that only CIL’s and HHA’s could provide the service. However after the state developed regulations for payment of taxes, background checks at the consumer’s request and other rules, most of these shops no longer wanted to provide services.

This is just one example of why we are concerned about the recommendation in the Post Audit Report that the payroll agents bid for contracts. We have had experience with “the lowest bidders” and have seen what they don’t do to provide services.

The program with all of its components has been highly successful. 80% of people on the Physical Disability (PD) Waiver choose this option and 30% of people on the Frail Elderly (FE) Waiver choose it.

COMMENTS AND FACTS SPECIFIC TO THE POST AUDIT REPORT.

1. The other states that the report refers to that provided payroll agents do not have the same program that we have in Kansas. Nebraska doesn’t have a self-directed option. Colorado has the option to self-direct, but the person must be on the program for a year before they are given that option. There are also states that have much higher reimbursement rates such as Wisconsin, which was not included in the report. The point is that we are comparing different programs with different services.

2. There was no comparison done on the cost savings from using self-directed services to using non self-directed services.

3. It is our understanding that in reviewing the three CIL’s the auditor only looked at case records for the Frail Elderly Waiver and none on the PD Waiver. Yet their conclusions and recommendations are for both waivers.

4. On page 4 of the report, the auditors describe the CIL’s as the employer of record. Many of the CIL’s do not view themselves as the employers. To our knowledge there have been no court cases in Kansas to determine that in fact the consumer is not the employer. The consumer recruits, hires, trains, supervises, sets the schedule and approves the time sheet submitted for the employee. The CIL pays the taxes, and cuts a check to the attendant. It would be like saying that EDS is the employer of record for all state employees because they write the checks.

5. Centers for Independent Living (CIL’s) are by definition “consumer controlled organizations. By that I mean that the majority of the board of directors, staff and management staff must be people with disabilities. That is a requirement of state and federal law. We applaud those regulations. However, in seeking health insurance, workers compensation insurance and other similar benefits, the fact that the majority of our staff have disabilities puts us at a distinct disadvantage with other agencies who provide this service. Our costs are higher due to the disabilities of the people we employ. We were not certain that was considered in determining administrative costs.

6. The report suggests that competitive bidding will keep costs down. Unless we look at the overall program, that is a difficult statement to defend.

a. Is the overall cost of the program less expensive because people have the option to self-direct?

b. Are the additional services provided by payroll agents keeping overall costs down as compared to other states?

c. By having competitive bidding does that reduce or eliminate the choice of providers? In fact, if only one CIL provided this service for the whole state, the overall cost could be cheaper, but the quality may suffer and the consumer’s ability to choose providers would be eliminated.

In summary, KACIL does not support the concept of competitive bids for this program. It is a unique program and it works because of all the components. As you change one, it will impact other parts of the program.

If you must make changes, set a limit on administrative charges. But if you do that, we ask that you look at all agencies administrative fees and ensure that you establish the same limits across the board.

When we asked the Department of Administration what the state allows for overhead, we were informed that each agency makes that determination. Will you change that policy and set a standard rate?

We’ve sat through too many budget hearings on Department of Transportation and on Nursing Facilities to believe that no state agency allows for more than 12% overhead.

If changes are to be made or recommended we would ask that you at least do a more extensive audit which looks at all waiver programs. Research more specifically what other states actually provide under both self directed services and their exemption to the nurse practice act.

Thank you for the opportunity to present to you today. I’d be happy to attempt to address any questions.

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