Personal Independence Commission

March 10, 2003

Governor Office Building, Rom 450
MINUTES

Kirsten Dunham called the meeting to order. PIC members present were: Kirsten Dunham, Lt. Governor Joe Maxwell, Roger Garlich, John Solomon, Neva Thurston, Anne Jackson, Linda Allen, Greg Vadner, Ron Vessell, Mary O'Brien, Wendy Hayes, and Kay Green for Anne Deaton.

Co-Chair Reports:

Lt. Governor Maxwell - There has been movement in the Legislature in regards to the nursing home bill. Another bill, S B 556 has been filed. It will probably be combined with S B 311. The bill:

1. Requires background checks for owners and employees
2. Allows for admissibility of prior statements
3. Allows fines to stick regardless of corrective behavior on the part of a facility for past violations
4. Allows investigators to have access to complaints
5. Provides for non-retaliatory action against employees and others who self-report
6. Allows annual inspections for facilities who have had no violations in the recent past, but still have the ability to do other inspections
7. Incentives for self-reporting

Missouri Housing and Development Commission is focusing more on accessible housing. The Sara Project at Laclede is 100% accessible. There are additional units in Raytown and St. Louis that are also 100% accessible.

It is important for each work group and agency to keep a record of every goal that has been achieved since the inception of the Commission. This information should be given to Rob Honan. The Governor has requested a report be given him in April.  He also has a new Chief of Staff, Jane Deuker, who will need to be brought up to date on the PIC.

Medicaid Managed Care RFI:

Greg Vadner, Division of Medical Services - DMS is looking at expanding managed care in Medicaid to include the elderly and disabled. There are two things behind this. First, Oklahoma is reporting good things that they are doing with the disabled population in their managed care program. Second, there are conversations at both the state and national level about how to reshape the way medical services are delivered. The Mooney Report recommends consideration of Medicaid and managed care. Two issues that have been raised are that Medicaid managed care could end up driving more people into nursing homes and also how in-home service assessment would work under managed care. Currently in-home assessments are done by Senior Services. This might be turned over to a private company. They are also interested in ways to support consumer directed care.

Mr. Vadner will get the summary of this information to the PIC members before the next PIC meeting in May, then be given some time on the agenda to have a discussion about the pros and cons of the recommendations.

Informed Choice:

Mary Clark, University of Missouri, Columbia - Gave information about a research study titled "Consumer Directed and Personal Assistance Services, What are the Differences". They interviewed 114 adults in their homes about their Personal Assistance Services. Approximately half of the participants were referred from Centers for Independent Living across the state and were participating in a Consumer Directed PAS Program. The other half were referred from Division of Health and Senior Services and were receiving services through home health agencies. A standard survey was used for the interviews. Participants were asked about their health and about their functional status. They were then asked about their levels of satisfaction with their assistance help, their perceptions of choice over what tasks were performed and how they were performed, and how much the services helped them participate in the community.  The two groups were also asked about their perceptions of their physical and emotional safety related to receiving PAS services. They were also asked about their unmet personal assistance needs.

The results showed that participants in the Consumer-Directed group needed more help with activities of daily living such as bathing, dressing eating, toileting than those in the agency directed group. They also had higher needs in other daily activities such as preparing meals, shopping, running errands, housekeeping and transportation. 90% of participants in the consumer-directed group reported needing assistance with at least four activities of daily living compared to 43% in the agency directed group. 43% of the 114 reported that they had had at least one instance of unmet needs. The Consumer Directed group rated their assistance as more competent and well trained. They reported having more choices about their services and were more satisfied with the way their personal and household needs were met. There were no differences in the two groups as far as perceptions of personal safety were concerned.

Conclusions:  Participants in both programs reported high levels of satisfaction with services, however individuals in the Consumer Directed Program were more satisfied, reporting more control over their services and more choice in the timing and nature of services. There were substantial unmet needs in basic life and other daily activities in both groups. The lives of persons with disabilities could be improved by increasing funding for both of these programs.

Work Group Reports:

Informed Choice - Lt. Governor Maxwell. Are working to track their original objectives as defined by the PIC. And the 78 objectives. Committee goals:

1. Develop a document outlining available community services - In the process of printing 10,000 copies at a cost of $7,817.00. These will be distributed to hospital discharge planners, state agency people, nursing homes, Area Agencies on Aging and in-home service providers, among others.
2. Division of Senior Services will develop a database containing information about why people are entering nursing homes.  DSS has been working on this.  Software has been purchased and changes to the program are currently being made.
3. Training and educating hospital discharge planners and others who talk to people about long term care options. This is ongoing. The biggest obstacle is waiting for the Medicaid brochure to be available.
4. Pilot Informed Choice Training. A pilot Informed Choice Training was held February 27^th. The purpose of the training was to give people materials and manpower they could share with the community. The training session was divided into five sections; Introduction, Roll of the Informed Choice Provider, Communication Skills, Exploring Options, and Responsibility and Accountability. Linda Allen gave a brief summary of the training. She felt the training went very well.  She said there was one representative from the nursing home industry there and she met with three representatives the following morning.   They did raise some concerns, number one of which was issues relating to informing a guardian and the response if the guardian was not willing to let them speak with the person. There were other issues, but Ms. Allen is waiting to be informed of these. She said nursing homes will not allow Informed Choice trainers in until these concerns are resolved. It was decided that the nursing home industry should be given a definite deadline of March 21^st to respond, and then the trainings will proceed. Another concern was that the information from the resident was going to go directly to a CIL. The industry felt this information should go to Senior Services, as there could be a conflict of interest. Ms. Allen also requested when letters are sent to nursing homes Senior Services be copied so they know what is going on. Ms. Allen also indicated she would like to see a third pilot training focusing on just the elderly. There will also be additional trainings at Marshall Habilitation Center, probably in April. They have the protocol in place to do these trainings.

The Lt. Governor requested Ms. Allen send him and Ms. Dunham a list of the concerns raised as soon as possible. They could then set up a meeting to try to get things moving again.

He also said that any correspondence or information that is sent out by the work groups should be approved by the PIC Co-Chairs.

Eligibility and Access - John Solomon. Has been working with the Departments of Health and Senior Services and Mental Health.  There has been progress made on a standardized release of information form but still do not have a standardized admissions form. The work group makes the following recommendations:

1. The state needs to develop an Automated Initial Assessment and Referral System to be used by all human service agencies during the initial assessment process. The system needs to be simple and run as a desktop application. It would be a series of screens with links to other agency programs. For example, during the application process for Medicaid eligibility determination, the question may be asked, "do you have a child with DD. If yes the system would automatically bring up a reference to the Div. MR-DD. The potential for possible other links are almost endless.  Funding for the development of such a program may be appropriate through the Systems Change Grant.
2. There needs to be a formalized process for accessing the flexible funding authorized in H.B. 1111 Section 11.455. This could be accomplished through intergovernmental transfers of funds among agencies. In addition, a mechanism to ensure that persons are aware of this option needs to be developed.
3. Agencies with waiting list should develop a standard database, which can determine the average wait time by client. S.B. 266 sponsored by Senator Shields would mandate that the Division of MR-DD develop a plan to address the waiting list. We recommend that the PIC support this bill and ask that it be expanded to all agencies with waiting lists.  
4. For the Personal assistance program, request a legal opinion as to whether or not limiting this program by disability and or functioning level is a violation of client rights. Revise current laws and regulations to allow a guardian/designee to assist persons with DD to self direct their services. For the Division of MR-DD, the state definition of DD should be revised to be consistent with the federal definition. Persons determined eligible under the current definition would be "grandfather" in with their current services. Since this recommendation involves legislative action we are referring these issues to the Legislative Committee of the PIC for further review and recommendations.

Ms. Dunham suggested the flexible funding issue be moved to the Informed Choice Work Group, as they could make sure the money follows the person when they leave the institution.

Lt. Governor Maxwell moved that PIC support SB 266. Ms. Thurston seconded the motion. There was some discussion about any possible fiscal impact the bill might have, but is was determined that there was none.  Motion passed.

The Lt. Governor also recommended that the recommendation to change current laws and regulations be an action item for the next PIC meeting. A legal opinion and input from other stakeholders will be needed.

Will also compile a list of barriers to fully implement the "money follows the person" language.  This list will be available to the public. Plan to have this list available at the May PIC meeting.

Service Capacity and Continuum - Anna Jackson. Passed out a document indicating by county the economic impact of the personal assistant program. This was part of a survey conducted by the Missouri Centers for Independent Living. The work group took the position that one personal care attendant manual should be implemented statewide.

Follow Along/Outcomes - Mary O'Brien. Have been having joint meetings with he St. Louis Regional Advisory Council. Are working on several goals:

1. Quality assurance. Have been gathering quality assurance measures from CMS. Have the Home and Community-Based Services tool on a disk. CMS also has a Consumer Experience Survey, which the work group would like to see implemented in Missouri. The state could receive technical assistance from Rutgers and assistance from CMS is writing for grant monies. The tool identifies the problem areas, brainstorms remediation strategies, develops quality intervention activities, measures the impact of the intervention and evaluates he effectiveness of the strategy. The points are always access to care, choice and control, respecting dignity and community inclusion and integration. They have come up with three different survey tools: one for persons with disabilities and their families, one for case managers and one for providers.
   Ms. Dunham suggested that the work group take the quality tool and the information they have received from state agencies and do an analysis and summary for the May PIC meeting.
2. Identify the programs that currently have waiting lists. collect data on waiting lists and make recommendations for changes.
3. Self-determination. Missouri will use the principals of self-determination to provide services to consumers. These self-determination goals are: freedom, authority, support and responsibility.
4. Clearly defined appeal procedures. Have been pulling together all the appeals processes. Recommend that there should be a unified appeals process that is clear and concise. Also need definite, clear timelines - who to appeal to, dates, reasons. Also recommend that all appeals processes be posted on the Governor's Council on Disability web site.
5. A toll=free 800 number to provide information about services and supports in the community.
6. Contracted service coordination. Have met with two provider groups about this. 

Public Comment:

Liz Orr, parent - talked about the problems she and other parents have had in getting services for their children from the Regional Centers for Developmentally Disabled.  She also talked about problems with the school system.

Jim Tuscher, Paraquad - Has concerns about the state's proposal to move Medicaid to a managed care system and the effects this could have on people's ability to access in-home services. Feels the PIC needs to stay on top of this. He also requested that any future meetings concerning this proposed change be held at times that are convenient for those who would be effected by the change to attend, and that sufficient advanced notice of these meetings be given.

Nancy Murphy, Delta Center for Independent Living - Is aware of twenty-five persons in the St. Louis area who have indicated a desire to move out of a habilitation center into the community. She wanted to know with all the budget cuts how much it would cost for these twenty-five people to transition out into the community. If she has the cost she can advocate with the legislature for additional monies to help in transition.

Wayne Lee, Epilepsy Foundation of America - Had concerns about legislation relating to preferred drug lists which is now in the Missouri Legislature. This type of legislation can be very dangerous for people with disabilities and other health conditions.

Consumer Directed Options - Existing and New Possibilities:

Ron Vessel, Vocational Rehabilitation - VR Conducted a survey of 578 persons who have been on the Consumer Directed Program for more than two years. Among other things they asked them how their health was now as compared to before they were on the program. Overall, they felt their health was better than it was before they were on the program. They also looked at inpatient hospital costs for this group in the year before and the year after they were on the program. The year before participation these individuals had a $1.9 million in inpatient costs while the year after participation in the program these costs dropped to $823,000, almost a 60% drop in hospitalization costs and Medicaid costs. 

Eligibility for Consumer Directed PAS and for Independent Living Waiver - Dr. Jeannie Loyd - The original Consumer Directed Program began with the Non-Medicaid Eligible Program in 1984. The program and eligibility requirements are that an individual be at least 18 years old, have a physical disability, be employed, ready for employment or capable of living independently with the provision of personal care assistance services, meet the financial needs teas and be able to direct their own care. These requirements have stayed the same. The maximum amount of services for this program is based on hours per week and personal care services are the only services available on this program. In 1994 the Consumer Directed Program was added to the Medicaid State Plan.  This enabled the state to receive Medicaid reimbursement dollars for those individuals that were Medicaid eligible. The program requirements remained the same as they switched to the Medicaid State Plan except for the maximum amount of services that could be provided. We were now under a monthly cost cap that was determined by Medicaid each year. The Independent Living Waiver, added in January of 2000, added another dimension to the available consumer-directed services. The IL waiver changes the age requirements by putting an upper limit at age 64, adds a component on cognitive disability and a component on being able to self-direct.  It states that an individual may appoint a designee who cannot be the attendant. It also allows individuals who need more services than the monthly cost cap to access these additional services through the waiver. It also adds specialized medical equipment and accessibility adaptations such as home modifications. The number of individuals the waiver can serve is capped.  It is based on an appropriation and on the waiver application to the federal government.

There was some question as to if the ability to self-direct was in State Statute or a rule implemented by VR. It is in State Statute RsMO 178.661 and 178.662.

Consumer-Directed Services Grant - Linda Allen, Department of Health and Senior Services. This is a small grant to help the state determine where it is going in terms of consumer-directed care targeted at the elderly. They will hold focus groups and public forums to get input on this. There is also a partnership coalition being put together made up of groups and people who serve the elderly.

CMS Conference Report:

Kirsten Dunham, Neva Thurston and Mary O'Brien gave report on the CMS Conference. The main points were:

• Consumer advisory groups for the grants should be truly consumer advisory groups
• Money follows the person - There is money in the New Freedom Initiative to help states re-balance their long-term care system. There will also be technical assistance available to the states.
• Self-determination and individualized budgets - There are Independence Plus Waivers, which makes it easy for the states to file waivers and have control over the dollars they are spending.
• Informed choice in transitioning people from institutions to the community - Several states presented workshops on their models. New Jersey has had great success.
• Quality assurance and improvement - Measuring the desired outcomes for the individuals, what they wanted and needed
• State budget crisis - Opportunities to transition people out of nursing homes and institutions can be cost efficient.  Much emphasis on getting people out of higher cost institutions. States still have ADA obligations regardless of tight budget times
• HUD pre-conference session - Urged people to connect with the public housing authorities (there are 72 in Missouri) and also to connect with the state contact person for HUD.
• Independence Plus - Demonstration for families to do individualized family-directed services. MO Planning Council planning to use this.
• Single point of entry - Kansas, Michigan, New Hampshire and Pennsylvania are working on grants for developmental disabilities single point of entry. Wisconsin is working on a grant for single point of entry for all disabilities and several other states are working on grants just for physical disabilities and aging.
• Direct care worker issues - Still talking about career ladders and wage increases.
• Four demonstrations - Respite for adults, respite for children, direct service workers and children's community psychiatric services
• Technical assistance - Much technical assistance available to Missouri as a grantee state. There is money available through the federal government to help the grantee states.

Information from the conference should be posted on the CMS web site.

Real Choice Systems Change Grant Update:

Sherl Taylor, Division of Medical Services. Ms. Taylor distributed copies of the Annual Report, the semi-Annual Report and the End of the Year Report for the grant, explaining the grant activities that took place. She said the grant coordinator with CMS is Mary Fran Lavender. The Informed Choice Resource Guide is at the printers. The cost of printing the brochure is approximately $7,800 for 10,000 copies. The brochure will also be on the DMS web site. Ms, Taylor said Rutgers and the National Technical Assistance Exchange Collaborative are available to offer technical assistance to Missouri. The Division of Medical Services have been working with Rutgers and the Division of Senior Services to talk about wrap around services once an individual leaves a nursing facility. Rutgers is available to come to the state and offer mini workshops or to offer conference calls. They are available to offer any type of service that we as a state would like them to assist us in terms of research or guidance. Ms. Taylor distributed a letter from CMS talking about the Commission's involvement in the grant process or systems change process. Rutgers requested email addresses and contact information for the PIC members so they can send information regarding technical assistance issues directly to the Commission members. She also presented a detailed budget of the grant expenses.  $146,175 was carried over from last year into this year so they started the year off on September 28^th with $1,095,871. They have spent roughly $57,000 of that. Much of the money has gone toward Informed Choice, a small amount for PIC expenses and a portion for the demonstration grants. Ms. Taylor also shared information about other possible grant opportunities and the President's proposals for the 2004 budget.

Ms. Allen asked how the Informed Choice Brochures would be distributed. She said Senior Services is working with discharge planners from five or six hospitals and she would like to see how many patients discharged from the hospital with the brochure actually follow through and call Senior Services to see what options are available.

There was further discussion about the budget. The meeting adjourned.