Testimony to
House Appropriations Sub Committee on SRS
Rep. Melvin Neufeld, Chair
March 6, 2002
Thank you for the opportunity to discuss issues related to the DD Waiver. My name is Gina McDonald and I work for the Kansas Association of Centers for Independent Living.
The purpose of the original Developmental Disabilities Reform Act was to move funding and resources to community based services. The philosophy behind it was to ensure that the priority for funding was for community services and to ensure that consumers had choice of providers and programs.
The philosophy of the department of SRS at that time was one that supported the skills and abilities of people with developmental disabilities. Many agencies were trying to create independent living situations and supported employment was very popular. Keep in mind that the same people with the same I.Q.’s who were previously in institutions were now living on their own and working with minimal supports. The only thing that changed was the expectations and teaching skills of the “professionals”.
As SRS was writing the regulations for the DD Reform Act, a number of other changes were taking place regarding services for people with Developmental Disabilities (DD).
The first was to maximize federal funding by using the Medicaid waiver. Agencies serving people with developmental disabilities had a number of funding sources, which allowed and encouraged people becoming more independent. Most, including, but not limited to county mil levy, were not matched with any federal funds.
There was also funding coming to the agencies from the MR/DD Waivers, which used state General fund dollars to match federal funds for people who would otherwise be eligible for ICF/MR’s. However, there was a large waiting list for people to receive services under the waiver.
SRS proposed to get all other state funding, with the exception of state aid and use it, along with SGF to match federal funds for the Waiver. SRS
promised that this would wipe out the waiting list, which it did for about one year. What it also did, was put most consumers with DD under the waiver.
The second change was to develop a “managed care” system of payment to Community Developmental Disability Organizations (CDDO’s) across the state. The effort was to develop “regional gatekeepers” who would be responsible for ensuring service provision to all people with D.D. in their areas. They were also required to contract with other agencies who met criteria to provide services. Those other entities were known as Community Service Providers.(CSP’s)
For their efforts, each CDDO received a set amount of money per year as agreed to in a contract. The amount was contingent on the level of disabilities of the people in their area. Therefore, the more severe the disability was, or the fewer skills the person had, the more money the CDDO received. It also became obvious that the less the CDDO contracted out services, the less money they would “lose”.
Finally, many of the services were “bundled” into a group of services. Prior to this change, an agency may be reimbursed for Supported employment, personal assistance services and independent living for a person who works at a job with a job coach and lives in his/her own apartment with assistance from a personal attendant (PA) to transfer, bathe and dress. The PA was only reimbursed for the time they were actually providing services.
The consumer would also have a trainer come in and teach them to cook, clean, budget money, pay bills and locate transportation. The intent would be that the trainer would only go when needed, and the agency would only be reimbursed for training time. The agency would not have higher rates because the person did not have skill, nor would their rates be reduced as the person gained skills.
With bundling of services an agency is reimbursed an amount contingent on how few skills the consumer has. The agency is reimbursed one amount for day services and one amount for residential services.
The incentive is to provide services in a congregate setting, not individualized and to not give people new skills, because as they learn independence, the reimbursement for the CDDO goes down. In effect, the CDDO is “punished” financially for teaching people skills.
Bundling further prevents an individual from just getting PAS services, since it is combined with Day or Residential supports.
Further, as regulations were “refined” they further reduced the consumers right to self direct their care and imposed more controls by requiring a family or individual who receives services in their own home to get the home “licensed” using a “family friendly” or “limited” license. To date we have yet to see in rules or regulations regarding these terms.
Another “rule” being imposed with no regulatory basis is requiring some CSP’s to do background checks on parents or guardians who are providing care for an adult child who is living with them. This is ridiculous, but we are told it will soon be in regulations.
As these changes were being implemented, a change in philosophy also became evident. There is no longer an assumption of success, but one of protection and control. People need to be protected from harm and the notion of the right to fail became taboo. The same people, who were succeeding, now need to live in congregate settings where we control their every move.
My experience over the years has been that people with developmental disabilities tend to have their rights restricted based on how much money we have. The more money we have to spend, the more we have to “protect” them. SO I was hoping that since we are short on funds, maybe we could consider giving people back some of their rights and allowing the agencies to provide an array of services.
Consultants who have reviewed the waiver have remarked that the MR/DD Waiver in Kansas is based on a process, not an outcome model.
RECOMMENDATIONS:
The ideal would be to create “ONE WAIVER” based on the PD Waiver model. People would be evaluated, a plan of care which must be approved by SRS is written only for the hours needed and reimbursement is made for the services.
In the event that this ideal is a long-term strategy, we suggest the following:
1. Separate “bundled” services. This would allow the possibility of consumers getting PAS services without having to use other unwanted services. It would also allow for Supported Employment to be a viable service. Since the new funding stream began, fewer and fewer people with developmental disabilities are seeking, finding, and keeping jobs. This is contrary to both independence and any hope of moving people off services.
2. Tiered system rewards lack of skills instead of training independence. Create ways to reward agencies that promote independence.
3. Eliminate requirements to license individual’s homes.
4. There appears to be a limited use of natural and community supports. Encourage use of community supports and reward agencies who use them.
5. Allow same rules for self-direction on MR/DD waiver as on other waivers. Eliminate requirements about where the individual lives. Encourage independent living situations.
6. Add a service to the waiver called transitional living, which allows agency to be reimbursed for providing training to individuals in their own apartment or home. Reimbursement should be based on amount of service needed and only when service is used. Create bonuses for agencies that get people off the waiver.
7. Eliminate need for background checks for consumers who live with parents or for guardians. It is invasive, wasteful, and time consuming.
8. Ensure that advocates as well as providers have regular input into the changes to rules, regulations, and practices.