Personal Independence Commission

October 8, 2002

State Capitol Building
Jefferson City, MO
MINUTES

Members in attendance:

Kirsten Dunham
Roger Garlich
Ron Vessell
Representative Lana Ladd Baker
John Solomon
Juan Samaniego
Ann Deaton for Dorn Schuffman
Brenda Campbell for Linda Allen
Robin Rust for Greg Vadner
Anne Jackson
Wendy Hayes
Senator Patrick Dougherty
Mary O'Brien

Kirsten Dunham called the meeting to order.

Public Comment

JoAnn Noel, MO Planning Council for Developmental Disabilities -The DD Planning Council offers their assistance in Missouri's progress in implementing Olmstead for people with Developmental Disabilities.  The Planning Council will be working with the Division of MR/DD in evaluating efforts and providing informed choice in developing and evaluating the development of comprehensive person centered plans for individuals who are desiring to live in the community.  They hope to work with the Division of MR/DD on keeping data on the progress of individuals with developmental disabilities who are requesting to leave the hab centers, nursing homes and other settings.  The Planning Council has also closely followed the development of the Informed Choice Curriculum.  They feel once the curriculum is finalized this should lead to the next step of determining how families, individuals with disabilities and providers  will be informed of their rights under Olmstead.  The Planning Council feels that people who work in the institutions should receive the training because of their influence over residents and family members so they know their rights, and case managers should also receive the training so they can offer a full array of choices.

Susan Pritchard-Green, MO Planning Council for Developmental Disabilities. - The Planning Council is concerned over several issues.  Funding is a major concern.  Reimbursement levels for providers are low and have not changed for several years.  There is also a shortage of providers.  Another part of this issue is some of the consumers who might choose to leave a facility have complex behavior or health needs.  This puts a greater burden on the providers.  Another concern is it is difficult to identify and track the numbers of people placed in institutions.  Data is critical to measure progress.

The Planning Council is also working on a manual for providers.  The objective of the manual is to help providers understand what they need to do to become a provider so that they can continue to receive funding to provide supported living services in a community setting. 

John Solomon asked what agency or agencies are responsible for making sure the money follows the individual into the community?  Ms. Deaton explained that Medicaid pays for services that they bill to them. 

A list of all questions posed during this meeting will be compiled and given to the workgroups for their review and recommendations.

The Comprehensive Waiver is the wavier that individuals transitioning out of a nursing home or rehabilitation center normally would apply for.  The problem they are running into is there is not enough funding to meet the demand.  They are working on prioritizing their waiting list to ensure no one is left homeless.  There is no cap per person, the waiver is in the aggregate so that individuals receive care specific to their needs.  The personal services provided typically vary from the state plan. 

Ms. Rust talked briefly about the personal care statute and that it prohibits the state from paying more on a monthly basis for state planned personal care than it would in a nursing home.

Ms. Deaton is going to check into what it cost for an individual living in the community as opposed to the same type of individual living in a nursing home over a two year period.  Ms. Deaton stated that they are beginning to look at the individuals in residential facilities and then identify barriers so they can go to work on removing the barriers, whether it is funding, no providers, etc.

The point was made that with Vocational Rehabilitation services the program is more self-directed, with Mental Health or Senior Services it is more someone else making the decisions for the person. 

Steve Vaughn from Disabled Citizens Alliance for Independence in Viburnum discussed the Governor's press release relating to a plan for people in imminent danger.  He described some tragic situations in his community relating to the recent changes to spenddown.  He is interested in seeing a plan in writing that would help take care of these individuals.

Ms. Campbell stated she believes the reason there is no plan in writing is because each individual must be handled on a case by case basis.  They need to check to see if the person is involved with any other organization or center.  So as these various cases come to their attention the lines of communication have to be open between the division directors and the local level.

Ms. Dunham stated that there is no plan and the only change so far has been raising the income eligibility to 80% of poverty.

Representative Baker pointed out a gap in the numbers.  During session they were told that there were 25,000 individuals on spenddown.  After adding all of the numbers up from the different agencies that serve individuals on spenddown there is 17,000 individuals that are not receiving services from anyone.

Mr. Samaniego asked about the possibility of a document being sent out that gives all individuals on spenddown what choices are available to them.  We are focusing on getting people out of nursing homes, but spenddown is causing them to go in faster then we can get them out.

Senator Dougherty would like to see the departments provide their staff with very clear information on the appropriate person(s), with contact information, on who to contact or who to have their clients contact when they refer them to the other agencies or organizations.  He wanted to know if and when a letter to the 17,000 spenddown recipients that do not have direct dealing with anyone but Family Services.  Ms. Rust offered to discuss it with her department.  Lt. Governor Maxwell requested that  a response be received in a timely manner. 

Lt. Governor Maxwell has a meeting scheduled with Mike Hartman to discuss the status of the Governor's Office mandate to do a case by case management of everyone.  He will also receive clarification on what information has been communicated on to the front line staff regarding resources available to their clients.  He also agreed to check on the number of individuals that have gone into a nursing home as a direct result to the changes in spenddown.  He and Ms. Dunham will discuss and then forward the information on to all commission members.  

If it is based on a case by case management it is important that the advocates are out helping these individuals advocate for their case and push their needs forward. 

Jack Lambrecht, from RAIL in Kirskville, discussed his concerns with the recent spenddown changes as well and wanted to know where he could turn for help with his older clients.  Lt. Governor Maxwell told him to contact his Elderly Advocacy Assistance office and they would refer him to the appropriate individual(s).

Jim Tuscher, Paraquad in St. Louis, commented that there are not enough resources to be able to reach those 17,000 individuals.  He believes that there will still be individuals that fall through the cracks and that an emergency plan should be instituted to delay the harsh implementation.  It seems to him that the cost of implementing a plan is going to be far greater then delaying the implementation of the changes.  It was suggested that Mr. Tuscher and others let Senator Russell know of the impact it is having on the lives of individuals in the area, the more information he has to make decisions the better everyone will hopefully be.

Co-Chair Reports

Lt. Governor Maxwell reported on several issues, first off he discussed the high points of the spenddown discussion from earlier.  He is also pleased that we are working parallel with the various groups, such as senior citizens and nursing homes, so that we can work together and not have to try and figure out how to bring them together at the end.  He reiterated the importance of not letting the budget crisis get in the way of what we are here to do.  The Governor had reported on the expected budget shortfall in September.  Lt. Governor Maxwell reported that it is worse then predicted at that time.  Missouri Sales Tax revenues are down from the same time last year and they are hoping that Missourians shop in Missouri over the holiday season to try and help bring that number back up.

Department Updates.

Department of Mental Health is working on coordination of services and system of care.  They feel there is an expectation of a lead agency and they are putting a lot behind that effort.

Department of Social Services said the Real Choice Grant will begin picking up the expenses for the commission.  The Informed Choice Group is working on a more finalized curriculum and will bring it to a future meeting.  The work group is ready to go out and do some piloting on the training.  Thirteen proposals were submitted as a result of the RFP that was released this summer.  They are recommending that the top seven be funded, but the final decisions still have to be made.  They will be presented at a future meeting for the commission's input.  Those individuals that represent agencies that submitted proposals will need to remove themselves from the decision making process.

Vocational Rehabilitation provided the commission with a written report.  Ms. Dunham will ask for clarification on the waiting list.  She will try and get it broken down by Independent Living Waiver versus those that are Non-Medicaid Eligible. 

The Informed Choice Committee's curriculum is pretty much done.  They are asking to move forward with some pilot trainings.  They want to test the curriculum to find out if they have forgotten anything.  They talked about where the pilot training would be held, how it would happen and who would be doing the training.

Mr. Samaniego made a motion for the Informed Choice group to move forward with the training and plan the wrap-around.  Mr. Solomon seconded the motion.  The motion passed unanimously.

Workgroups

At the September meeting the consensus was that workgroups would be formed.  The group reviewed the proposed work group titles and activities.  They came up with the assignments for each group, its structure and timeline as to when work is to be completed.  The proposed work group structure was amended to add a "Legislative Committee" and to combine the "Outcomes" and "Services Coordination" workgroups.

Representative Baker made a motion to adopt these recommendations.  Mr. Samaniego seconded the motion.  Motion passed.

Chairs will recruit individuals to be on their committee and will know what staff  have been identified as resources for statistics or program information.  Committee members were reminded that they should not represent themselves as commission members.

The next meeting will be November 12, 2002.   The workgroups will meet for half the day and the Commission will meet the other half.