Personal Independence Commission |
January 13, 2003State Capitol Building, Hearing Room 3 Lt. Governor Joe Maxwell called the meeting to order. PIC members present: Joe Maxwell, Kirsten Dunham, Anne Deaton, Linda Allen, Mary O'Brien, John Solomon, Juan Samaniego, Neva Thurston, Greg Vadner Public Comment:Diane Mack, Blue Springs - Parent. Her daughter was receiving services through the Division of Health and Senior Services but the providers sent by the Home Health Agency did not work out for various reasons. For the last three years her daughter has been on the Self Direct Program through The Whole Person in Kansas City. However, according to the Division of Vocational Rehabilitation's guidelines for this program her daughter was disqualified because VR felt she could not self direct. They are appealing this decision. Ms. Mack feels her daughter can self direct. Ms. Mack told the PIC she would like to be her daughter's PCA and be paid for caring for her. She asked the PIC for their assistance in making this possible. Her family has lived in other states and she was paid for caring for her daughter. She would like to see Missouri adopt a similar plan. Charlene Adams - Parent. Her daughter lives at home, works part time in a sheltered workshop and attends a day program part time. She has a seizure disorder which prevents her from working full time at the workshop. She is able to care for herself, but needs constant supervision because of the seizures and because of her cognitive functioning level. She also stated that good care providers are difficult to find. Ms/ Adams was hopeful that the PCA Program through The Whole Person would enable family members to be paid for caring for her daughter. Because it was felt that her daughter could not self direct and also because she did not have a physical disability she was unable to receive services through the PCA Program. The family then requested placement in a similar program for cognitively disabled but were told by VR that there was not a program like that available. Ms. Adams feels this is a violation of ADA. She feels Missouri needs to comply with the ADA and Olmstead by providing care for the cognitively impaired as well as the physically impaired. Kim Sternemann - The Whole Person. These changes came straight from Missouri Division of Vocational Rehabilitation and not from the CIL's. When the program was started the interpretation of what it means to self-direct was understood differently. In the beginning self-direct meant that the individual was able to say what they wanted or needed such as I want to eat or I want to get up now. This definition was changed to the ability to hire, fire, train and supervise all by their selves. It is felt that this is a deliberate change to reduce the cost of the program and the number of persons on the program. Doris Weber - Life Care Planning. Her agency works with families who have a member with a developmental disability, head injury or mental illness to do long term care planning. 99% of the families she has worked with are still caring for their sons and daughters with a disability in their home. In one-third of the 600 families served in Missouri the parents are over the age of 65. They are between the ages of 65 and 95. There is great concern as to what will happen to these adult children when the parents are no longer around to care for them. Many younger parents would like to self-direct care for their children. Kansas has a self-directed care program through payroll agents and parents are caregivers who are paid through payroll agents. She requested the PIC address this issue in Missouri. Neva Thurston mentioned that the Missouri Planning Council has a great deal of information for parents about accessing and controlling money. Their web site is www.mpcdd.com The Planning Council also has published a manual that teaches people how to become a provider. That manual is also available on their web site. Debbie Herpst, St. Louis - Parent. In order to avoid institutionalization children with disabilities and society in general needs to be educated. The stress of caring for children with disabilities often results in the parents also becoming disabled. This in turn impairs their ability to care for their child. Ms. Herpst also said that Missouri needs to look at the Hancock Amendment and needs to raise taxes in order to provide the type of services needed. She also talked about waiting lists for various programs and services. the difficulty of reaching case managers in the St. Louis region, the use of child restraints in state schools, and the lack of re-evaluation of children placed in state schools to see if that placement is still accurate. She recommended that the PIC learn about IDEA (Individuals with Disabilities Education Act.) She also requested the PIC read a National Academy of Sciences publication for education of children with autism and also a California document titled "Autism Spectrum Disorders, Best Practices Guidelines for Screening, Diagnosis and Assessment. Wayne Lee - National Epilepsy Foundation. The National Epilepsy Foundation is interested in state issues such as cost containment in Medicaid. He is going to get information to them regarding this and would welcome any assistance in this effort. Lt. Governor Maxwell requested Ron Vessell prepare a memo to Patrick Lynn in the Governor's Office and Kirsten Dunham explaining the changes in the Self-Directed PAS Program. HB 11 Money Follows the Person Language:Jim Tuscher, Paraquad. The goal of this part of the legislation was if the person was eligible for Medicaid funds and eligible for nursing home care per the 18-point assessment, they would get to choose where they received their services. Mr. Tuscher then explained parts the bill. In Section 11.455 it states "provided that an individual eligible for nursing home care be given the opportunity to have those Medicaid dollars follow them to the community to the extent to meet their unmet needs." These persons would be allowed to choose personal care program options in the community. This would include programs run by the Department of Health and Senior Services and the Department of Mental Health, as well as the Division of Vocational Rehabilitation. The original thought was that people could choose which program they went to. John Solomon then raised the question of persons with cognitive disabilities accessing these funds to get services. Mr. Tuscher said that though they would not qualify for the self-directed program through Vocational Rehabilitation they would qualify for other programs through other agencies, so the answer is yes people with cognitive disabilities can access these funds. The Lt. Governor asked Mr. Tuscher to work with his office to compile a list of items that are still barriers on this language. Greg Vadner asked Mr. Tuscher to add NEFRA, (Nursing Home Reimbursement Allowance to that list. Co-Chair Reports:Nursing Home Update - Molly Kottmeier, Legislative Liaison in the Lt. Governor's Office, talked about legislation that was going to be introduces and requested the support of this legislation by the PIC. The Lt. Governor's Office and the Governor's Office have worked together to write this legislation. Components of this legislation are:
State Budget Update:Patrick Lynn, Governor's Office. The state is facing a billion dollar shortfall in the 2004 budget. The state has a 7 billion dollar budget to take these cuts from. The Governor will propose a package to increase state revenue and hopefully this can go to a vote of the people this summer. People need to contact their legislators daily and encourage them to pass the Governor's revenue package. Report from State Schools:Barbara Beal, Director of Community Relations, Missouri School for the Blind. Gave a history of the school. The School for the Blind currently has an enrollment of 118 students. Students are between the ages of five and twenty-one, all are legally blind, and about half live on campus. Students come to MSB after it has been determined by the parent and their local education agency that MSB is the best placement, that the services the child needs cannot be received at their local school district. Each student has an IEP with goals to be met each year. The goals are in line with the Expanded Core Curriculum established by the National Agenda for Blind and Visually Impaired Children. The Expanded Core Curriculum works toward whatever skills are needed for independence with the emphasis on independent living. Students between the ages of five and fourteen are either enrolled in the K-12 Division or the Multi-Disabled Deaf/Blind Division. There are extra-curricular activities for the students. At age fourteen students are either placed in middle school or high school or they are placed in the Vocational Education Program. Mary O'Brien requested information on how much the state is paying Missouri School for the Blind and how many of their students go on to live in out-of-home placement. The Lt. Governor requested this information be sent to his office for distribution to the PIC. They will try to get the same information for Missouri School for the Deaf. Pam Shaffer, Interim Superintendent, State Schools for the Severely Handicapped. State Schools were founded in 1959 as a day school program. There are thirty-six locations around the state. If a district school cannot provide services for a student they can refer them to a state school. IEP's for the students are developed at the local school district. Students receive instruction in math, English, art and science, as well as physical, occupational and speech therapy and possible behavior support. The State Schools serve approximately 1,002 students and have a budget of $33 million. They also provide funding to local school districts through a Severe Disabilities Fund to provide services for students who could be better served in their local district. There are 256 students served through this fund. Some discussion followed as to if parents are informed they have the right to send their child to their district school rather than a state school. They are informed of this right in the Procedural Safeguards given during the IEP meeting. Some parents choose to send their child to a state school and it was felt that they should be able to make that choice. Real Choice Systems Change Grant Fiscal UpdateSherl Taylor, Division of Medical Services. At the end of last years grant period, which ended September 27, 2002, $77,221.24 had been spent. $146,174.76 has been brought forward. Based on the revised budget for the PIC, which was approved on June 28, 2002, the budget for this year would have been $949,696. That gives this grant year $1,050,000.76. The obligated amounts are; $15,000 for demos and $24,000 for the PIC budget for a total obligated funds of $144,246 with the remaining balance of un-obligated funds for this grant year of $951,624.30. Mary O'Brien requested contact information for the Technical Assistance Person for the grant, a copy of the Annual Report for the grant and information on grant funding available through technical assistance for the states. Ms. Taylor said she would get the information and forward it to the co chairs to distribute to the Commission. Ms. Taylor updated the group on the status of the Nursing Home Transition piece. CMS has the information. We need to show that it remains in focus with the original goals of systems change. Ms. Allen asked about the status of the brochure to leave behind in nursing homes. She requested the PIC members receive a copy before the next PIC meeting. Mr. Vadner asked Ms. Taylor to email a copy of the brochure to Kirsten Dunham by the end of the week. They would then distribute it to the Commission and set a deadline to take comments. Lt. Governor Maxwell raised some concerns as to if the grant activities are on schedule. He was concerned about the status of the pilot for the Standardized Universal Application form and the Informed Choice Pilot Training. Another concern was with the status of the demonstration projects. Standardized Universal Application form is being piloted in Department of Health and Senior Services TBI Program. Ms. Allen will get an update on the status of pilot program for the March PIC meeting. Ms. Taylor indicated that the demonstration projects should begin around February 1st. Ms. Taylor also indicated that they are waiting for the approval of the PIC to go ahead and do the pilot training on Informed Choice. Reports from Work Groups:
Eligibility and Access - Have not met since the December PIC meeting. Do have some concerns about the content of the Universal Application Form. Lt. Governor Maxwell asked the Eligibility and Access Work Group to look at the issues that were raised in public testimony and also to look at the specific barriers on HB 11. Follow Along and Outcomes Work Group - Have a lot of goals, quality assurance measures. Work group needs a non-retaliation policy from the PIC. They are going to re-define self-determination and need people to help in this process. They also need the appeal processes from the different agencies in the state. Informed Choice Work Group - Anne Deaton reported that there is a process in place for the Informed Choice Volunteer to enter a habilitation center to talk with persons who are interested in moving to the community. Information on this process will be distributed to the PIC. There are concerns as to who will be the lead agency for the Informed Choice Training, where the information will be housed. Linda Allen reported that she had met with representatives from the nursing home industry. The nursing home representatives had some concerns. They would like to have a comfort level with the curriculum and they do not have that at this time. They would like to attend a PIC meeting or see the curriculum presented. Also, since Paraquad is having success with moving people out of nursing homes could part of the protocol come out of these existing contacts with facilities. The relationship between the advocate and the nursing home is very important. They also wondered if community advocates could train nursing home employees, staff, directors of nursing, etc. on the choices that are available to people. They had questions about outcomes and who was going to follow the outcomes. Also concerned about group presentations as opposed to talking to individuals. There needs to be a single point of entry to cut down on confusion. There were concerns about mental health residents. The industry had some good ideas about identifying individuals. Also, do not overlook the importance of the discharge planner. Senior Services is considering having their Enhanced MCO Workers add the Informed Choice Training as part of their activities. Lt. Governor stated that a lead agency needs to be selected to conduct the trainings, establish which facilities those who are trained will go into, help finalize and develop the protocols for how a trained volunteer goes into a nursing home and makes contact with the resident, and would assume liability. Ms. Allen volunteered Senior Services as the lead agency. She felt it was the logical fit and could be tied as part of Enhanced MCO Process. They will establish a pass-through to go to Division of MR/DD. The Lt. Governor stated there needs to be cooperation between Senior Services, Department of Mental Health and Vocational Rehabilitation. Need to schedule the training for a limited group of volunteers. Need to invite nursing home representatives and habilitation center representatives to attend the pilot training. Requested commitment to conduct pilot training before the next PIC meeting. John Solomon made a motion that Senior Services would be the lead agency. Juan Samaniego seconded the motion. Motion carried. Ms. Allen also said her agency is working with Missouri Hospital Association on a pilot project of placing social workers in hospitals to meet people's needs at the time of discharge. There are approximately eight hospitals participating. Ms. Deaton shared information the Division of MR/DD has collected relating to people with MR/DD residing in nursing homes. There are 413 persons statewide with an MR/DD diagnosis living in nursing homes. Of that number there are 28 persons who are on a waiting list for community services. Service Capacity and Continuum Work Group - Juan Samaniego reported that Rob Honan with the Governor's Council on Disability had sent out requests for information to various agencies and organizations. He requested information on services currently being provided for people with disabilities in the areas of housing, transportation, personal attendant services and miscellaneous services. He did not request information relating to waiting lists, but this needs to be done too. Lt. Governor and Mr. Honan both stressed the importance of the work group chairpersons getting information to Rob Honan about all of their activities. Mr. Honan should keep Ms. Taylor appraised of the work group activities. CMS Conference in Baltimore:The Lt. Governor appointed Kirsten Dunham to represent the PIC at this conference. He requested she work with Ms. Taylor from Division of Medical Services to be sure they collect as much information for the PIC as possible. The Lt. Governor requested Rob Honan do research as to additional funding other states are getting. This should be done before the March PIC meeting. The meeting adjourned. |
