Personal Independence Commission

2004 Annual Report

SUMMARY

The Personal Independence Commission (PIC) has completed its third year of work. As established in Executive Order 01-08, which was signed by Governor Bob Holden on April 10, 2001, the PIC is charged with advising the Governor on necessary policy and program changes to assure that Missourians of all ages and disabilities have access to a range of community support services. The PIC includes individuals with disabilities, family members of people with disabilities, senior citizens, advocacy groups, the lieutenant governor, four members of the general assembly and representatives from the Departments of Social Services, Mental Health, Health and Senior Services and Elementary and Secondary Education.

Our tasks this year focused on implementing the Special Projects Team Action Plan in the areas of common application/assessment information, transition from institutions, assuring community options, and the Real Choice Systems Change grant.

COMMON APPLICATION/ASSESSMENT INFORMATION

Multi-Agency Data Dictionary

The PIC supported the efforts of the Office of Information Technology to work with the Departments of Health and Senior Services, Mental Health, Social Services and Elementary and Secondary Education - Vocational Rehabilitation to create a multi-agency data dictionary. One of the recommendations in the Olmstead Plan is to reduce the amount of paperwork and the number of times a consumer has to provide basic information on applications. People with disabilities, seniors and their families want a system that is easy to navigate and time efficient. Creating a shared data system will eliminate the need for consumers to repeatedly provide the same information.

The Multi-Agency Data Dictionary project was completed on time and within budget. The agencies agreed to the data standards, and a Memorandum of Understanding was accepted by all the agencies. The next step will be to create and submit for bid a project assessment quotation to develop the online client application form. The PIC supports the Office of Information Technology's budget request for e-funding in the amount of $3.4 million in order to continue the progress and make the data-base operational. (See Attachment 1 -- final report from the Office of Information Technology)

Universal Assessment Tool

The Division of Vocational Rehabilitation (DVR) and Department of Health and Senior Services have agreed to accept the assessments used by each agency. Both agencies use the same assessment tool (DA-2) for their respective personal assistance options. Often consumers may choose to switch from the consumer-directed program in DVR to the in-home service agency through DHSS, or vice-versa. In other situations, individuals may choose to use a combination of services from both state agencies. By accepting assessments from the other agency, DVR and DHSS are helping streamline the system and make it easier to quickly access necessary services. For example, if an individual is eligible in the DHSS program and meets the DVR eligibility criteria, then he or she would be eligible for the DVR program without having to complete another assessment. The individual may still choose to have another assessment if he or she believes their situation had changed.

TRANSITION FROM INSTITUTIONS

Division of MR/DD and Habilitation Centers

The Division of MR/DD submitted a waiver amendment to cover costs of transitioning from an institution to the community. CMS has approved the waiver amendment. The MR/DD waiver will now be able to cover costs such as down-payments for rent and utilities. DVR and DHSS are having further discussions about the possibility of covering transition costs through their waivers.

Another very significant step in the direction of Olmstead implementation has been taken by Anne Deaton and the Division of MR/DD. Taking input from consumers, parents/guardians, providers, staff and advocates, the Division of MR/DD developed a "Habilitation Center Five Year Plan" that was approved by the Mental Health Commission. The short-term goal for the first two and a half years is to inform habilitation residents of their options and transition 225 persons to the community. The long range goals include: increasing the continuum of care options; assuring that all habilitation center residents who can live in the community are informed of their options and supported with adequate services; using the habilitation centers as a safety net for individuals who need emergency/temporary care but cannot immediately be supported in the community.

A very important piece of this plan is that money will follow the individual from the habilitation center to the community. The funding will help ensure that adequate services are provided in the community. It can also help address the need to increase community provider capacity.

The PIC has endorsed the five-year plan, supporting the Division's initiative to inform all habilitation center residents of their option and transition individuals who choose to move to the community. Equally important are the efforts to provide adequate supports to individuals and families in the community in order to avoid unnecessary institutional placement.

The five-year plan, a transition plan update, and transition guidebook can be found at http://www.dmh.missouri.gov/mrdd/issues/trans/transition.htm.

Housing

One of the biggest barriers to transitioning from institutions to the community is the lack of accessible, affordable housing. Staff attended the Real Choice Systems Change Housing Forum in Iowa and brought back information to the PIC. The PIC formed a Housing Committee chaired by Karia Bastia, Housing Coordinator for DMH. To begin the process of collecting information on housing resources and options, the Housing Committee arranged presentations by the US Department of Housing and Urban Development, the US Department of Agriculture, and the Missouri Housing Development Commission to the PIC at the July 26, 2004 meeting. The Committee then worked on a Housing Resource Guide, modeled off the Guide to Home and Community-Based Services. The Housing Resource Guide outlines the housing options and services that are available to people with disabilities and seniors.

COMMUNITY OPTIONS, CHOICES AND CAPACITY

Department of Health and Senior Services

On April 1, 2004, the DHSS proposed rules to amend the state regulations that outline the rights of nursing home residents. The proposed rule reads as follows:

19 CSR 30-88.010 Resident Rights.

The department proposes adding a new section (9) and renumbering for consistency. PURPOSE: This amendment specifies when residents have the right to be informed of home and community-based service options.

(9) Prior to or at the time of admission, each resident has the right to be informed of the home and community-based services options that exist in the state. III

Office of Community Independence

The newly formed Office of Community Independence within the Department of Health and Senior Services serves to help coordinate and develop programs that assist disabled adults and elderly reside in the least restrictive care setting possible.

The mission of OCI is to assist Missouri residents achieve the highest level of community integration that is consistent with each individuals' unique attributes and strengths.

This Office will focus on three primary areas:

1. Identify those individual in long-term care settings (or referred to long-term care) with the interest and potential for transition to a less restrictive care setting.
2. Help inform Missouri residents on the range of home and community based options.
3. Assist individuals with coordinating services and resources in order to transition to the least restrictive care setting.

Responsibilities of the Office also include the sustained state-wide Informed Choice training and distribution of Missouri's Guide to Home and Community Based Services.

The staff for OCI include:

• Broad Band Manager - Coordinate all program efforts. Based in Jefferson City.
  
  
• Health Program Representative III - A housing specialist to develop a comprehensive housing databank and assist in the development of individualized transition plans. Based in Jefferson City.
  
  
• Health Program Representative I/II - Assists with program development and coordination, including Informed Choice training and distribution of HCB Guides to all long-term care facilities. Based in Jefferson City.
  
  
• Social Service Worker II - A community resource specialist to develop and compile a data bank of resources and services for elderly and disabled throughout Missouri. This position will also work closely with discharge planners form hospitals, rehabilitation centers and nursing homes to identify individuals prior to long-term care placement. Based in Jefferson City.
  
  
• Community Health Nurse IV/V - This position will help carry out the assessments and coordinate the transition of individuals to a less restrictive level of care. This position will also help supervise the seven Community Health Nurses based in regional offices throughout the state. Based in Jefferson City.
  
  
• Administrative Office Supportive Assistant - Coordinate to daily routine Office activities and direct community inquiries to appropriate staff. Based in Jefferson City.
  
  
• Community Health Nurse IIIs - There are seven Community Health Nurse positions throughout the state based in seven regional offices. These nurses will respond to the referrals received through OCI to assess individuals in long-term care, or those referred for long-term care, for the potential to transition.

The positions currently filled are the Health Program Representative I/II, Social Service Worker II, the Community Health Nurse IV/V, and Broad Band Manager.

REAL CHOICE SYSTEMS CHANGE GRANT

The Division of Medical Services continued to work with the other state agencies and the University of Missouri Kansas City Institute for Human Development to implement the objectives of the grant. DMS has requested a no-cost extension from CMS in order to finish all the grant activities in the next year.

Status of Grant Activities

Seven objectives were established over the course of the grant, with each objective having grant activities and deliverables. The Personal Independence Commission has worked with state departments in order to realize the completion of these seven objectives. The no-cost extension will allow the PIC to complete the remaining deliverables, as the status of each item is provided following the conclusion of this report. (See Attachment 2 - No Cost Extension Activities)

Cash and Counseling Task Force

A Cash and Counseling Focus Group was established as part of the efforts of the Real Choice Systems Change Grant. The members of the group included consumers, employees of state agencies, employees of advocacy and service delivery organizations, and members of the PIC. The group met four times from April to August 2004 to formulate recommendations for the implementation of the Cash and Counseling model of service delivery in Missouri. The results of these meetings were a series of recommendations presented to the PIC at the September 13, 2004 meeting. These recommendations will be further analyzed and discussed by the PIC over the course of the next year. (See Attachment 3 - Cash and Counseling Focus Group)

Public Forums

Twelve public forums were held around the state as part of the Real Choice Systems Change grant. This was an opportunity for people with disabilities, seniors and families to report on what was working well in their lives, what needed to be improved and what would be helpful.

While some positive comments were made about how important people's personal assistance services are, a number of challenges were identified. Concerns were expressed in the areas of:

• Health care benefits
• Housing
• Transportation
• Personal Attendant Services - quality; shortage of workers; low wages
• Confusing Medicaid regulations
• Employment - lack of opportunities; discrimination
• Accessibility of public buildings

Participants were asked what would help solve the problem. Based on their input, recommendations were developed, including:

• Resource directories - continue publishing the Home and Community-Based Resource Guide; publish guides that are specific to local regions.
• Medicaid Regulations - provide training to all front line case workers and Medicaid providers; provide on-going communication to individuals receiving Medicaid in order to update people on changes
• Improve training for direct care staff and provide better wages.
• Increase Medicaid reimbursement rates and improve the system in order to attract more Medicaid providers including dentists.
• The public transportation system should be reviewed at the state level, with particular attention to rural areas. A committee should be established with representation from individuals with disabilities, the elderly, public transit authority personnel, and state representatives. In addition to reviewing transportation issues around the state of Missouri, researchers should investigate how other states are addressing the issue of transportation.

Surveys of Consumers and Providers

The UMKC Institute for Human Development surveyed people with disabilities using community services and community providers. The consumer survey asked about people's satisfaction with their living arrangements, how much choice they have in their everyday life, satisfaction with services and supports, friends and family, how included they feel in their community, and their sense of self-advocacy. Some of the findings include:

• Approximately 67.8% of those who responded to the survey/interview wanted to live where they are currently living. Thus, 32.2% were unsure or wanted another residential setting.
• Many individuals with disabilities cited the need for financial assistance (60.6%), help finding and keeping a job (29.3%), and having someone to stop by and help with things either regularly or when needed (39.2%) as requirements to live where they want to.
• Fewer than half the respondents (47.0%) reported that they were informed about a variety of services they could receive in the community.
• Younger respondents were more likely than older respondents to report their ability for self-advocacy as lower.

The survey of community providers asked people's perceptions of the quality of life of people with disabilities and the level of informed choice offered to people with disabilities. It is interesting to compare the perceptions of the community providers with the experiences reported by consumers. For example:

• PROVIDERS:    42% were a little satisfied that individuals with disabilities had support. 11% were not satisfied that people with disabilities had support.
• CONSUMERS:  80% were satisfied. 20% were not satisfied.
• PROVIDERS:    30.2% believed that individuals were satisfied with their friendship network.
• CONSUMERS:  72% reported they were happy with their friends.
• PROVIDERS:    28.7% saw individuals dissatisfied with finding personal attendants.
• CONSUMERS:  51% were not satisfied with finding attendants.

Based on the results of both surveys, there are several recommendations to address the level of informed choice and satisfaction with services and supports.

• Assure that people with disabilities, community providers and state agency staff know about community options and resources. The consumer survey revealed that more attention should be paid to individuals between 40 and 60 years of age.
• Look for personal care attendant models that will make it easier to attract and maintain staff. For example, provide medical benefits and annual/sick leave.
• Address racial differences. African Americans rated many items lower than other racial groups. They were less happy with where they lived and noted they had been told less often about choices in the community. More investigation should focus on this issue through interviews and/or focus groups.

For full copies of the reports on the public forums and the surveys, contact the UMKC Institute for Human Development (800) 444-0821, (800) 452-1185 TTY.

SPECIAL PROJECTS TEAM UPDATE

In 2003, co-chairs Lieutenant Governor Joe Maxwell and Kirsten Dunham sponsored a Special Projects Team, which included the four Department Directors and was facilitated by Lois Heldenbrand. The Special Projects Team has continued its work in coordinating the activities conducted by the Departments of Social Services, Mental Health, Health and Senior Services and Elementary and Secondary Education. The Special Projects Team continued to meet throughout 2004, producing an updated report of agency actions. (See Attachment 4 - PIC Special Projects Team)

Attachment 1

Monthly Status Report

Contract No: C2020001004
PAQ Title: Multi-Agency Data Dictionary and Standards
Reporting Period: July 7, 2004 - August 6, 2004
Report By: Lucy Watts, Tier Technologies, Inc.

PROJECT SUMMARY

Develop a multi-agency data dictionary addressing the common demographic data attributes for the DHSS - Traumatic Brain Injury Project, DESE/Vocational Rehabilitation Project Success, Personal Care Assistance, and Missouri Rehabilitation Information System, DSS Real Choices Project, and DMH - CIMOR. The data dictionary will be reconciled with federal standards. Additionally, a mapping between the data dictionary and agencies' projects and an architectural rendering for a secure, online client application form utilizing the common data attributes and the mapping will be created.

A model memorandum of understanding to request department participation to implement data standards will be created. A data standard reconciliation methodology and model data standards policy will be developed. A recommendation will be documented for the placement of the multi-agency data standards within the existing enterprise architecture domains.

CURRENT PROJECT STATUS

Minutes from the July 2, 2004 meeting, in which the architectural rendering and standard data dictionary report were delivered for review and comment, were sent to all participants for review and approval. They were approved with minor changes.

The Departments of Social Services, Mental Health, Elementary and Secondary Education/Vocational Rehabilitation, Information Technology, and Health and Senior Services reviewed and requested corrections to the architectural rendering and standard data dictionary report. The corrections were made to the documents.

The OIT asked that a meeting occur with Timothy Haithcoat, Chairman of the MAEA Information Domain committee, to make sure that the data dictionary and the addressing standards being written by the Missouri GIS Advisory Committee were consistent. Some changes were made to both in order to reach consistency. These changes were sent to the Departments for their review and acceptance. The changes were accepted and finalized in the standard data dictionary report. The report and the architectural rendering were finalized and delivered to the OIT on August 6, 2004.

The Standard Reconciliation Methodology was delivered to OIT on July 13, 2004. It was accepted as final on July 16, 2004.

The Memorandum of Understanding was delivered to OIT on July 13, 2004. It was accepted as final on July 16, 2004.

The Data Standards Policy was delivered to OIT on July 13, 2004. It was accepted as final on July 15, 2004.

The recommendation for placement of the common data dictionary and reconciliation methodology was delivered to OIT on July 14, 2004. It was accepted as final on July 15, 2004.

PLANNED MEETINGS

The project was completed on August 6, 2004. No further meetings are planned.

PLANNED ACTIVITIES

The project was completed on August 6, 2004. No further activities are planned.

STATUS OF PLAN OBJECTIVES

The plan objectives were met.

MILESTONES COMPLETED

• Architectural rendering of an initial development phase for an online client application form
• Comparison report of common data attributes with national data standards and recommendations for alignment
• Final report of agreed-upon multi-agency data dictionary and standards and attribute mapping
• Model MOU to request department participation to implement data standards
• Data standard reconciliation methodology
• Data standards policy
• Recommendation for placement of multi-agency data standards within existing enterprise architecture domains

MILESTONES AT RISK

No milestones are at risk.

OUTSTANDING ISSUES

There are no outstanding issues.

OUTSTANDING ISSUES RESOLVED SINCE LAST REPORT

There were no outstanding issues from the last reporting periods.

OVERALL ASSESSMENT

The project was successfully completed on time and within budget.

Attachment 2

No Cost Extension Activities

Objective One:

To assure that the infrastructure and process reflects consumer choice and consumer input

Activities:

1. Appoint members of the Personal Independence Commission

2. Personal Independence Commission meets monthly

3. Recruit consumers to conduct focus groups/forums, interviews, and dissemination of information about the system

4. Train consumers on a regular basis about the system and their activities

Objective Two:

To streamline the system to assure easy and quick access to needed services and supports

Activities:

1. Identify perceptions of consumers, providers, service coordinators, and State agency staff

2. Identify lead agency to direct this activity for all agencies

3. Interagency Task Force to work on details about universal application and automated referral system (informed choice referral form)

4. Develop standardized application instrument

5. Pilot standardized universal application

6. Identify services and descriptions of these services for all relevant State agencies

7. Computerize the services and their descriptions

8. Develop training manual on universal application and referral system

9. Train State staff on the computerized system

10. Develop resources for consumers on the automated system

Objective Three:

To conduct interagency coordination and collaboration to address Olmstead stakeholders and Commission recommendations

Activities:

1. Establish an interagency committee to address these issues

2. Develop workgroup and assign activities

3. Develop a universal application to use across agencies

4. Pilot the tool across agencies

5. Develop quality assurance measure across agencies

6. Pilot the quality assurance measure

7. Discuss how consistent message on informed consent can be given across agencies

Objective Four:

To assure informed choices at all stages of care so that consumers can make good decisions about their lives

Activities:

1. Develop training on informed choices to a wide audience

2. Train consumers on how to discuss informed choice with other individuals with a disability

3. Develop resources for training

4. Inform and educate judges, public administrators, etc. on guardianship and options

5. Develop Website on options and benefits for people with disabilities

Objective Five:

To enhance linkages at critical points to assure successful transition to community living

Activities:

1. Determine which cases remained in institutional settings longer than one would anticipate

2. Conduct investigations into each case identified and determine relevant factors

3. Conduct a pilot that tries to address the factors identified in the research study

4. Evaluate the outcomes of the pilot and identify successful strategies

Objective Six:

To conduct research on small demonstration projects to identify best practices and projects that should be replicated and on data that would impact the system.

Activities:

1. Identify demonstration studies conducted in Missouri

2. Conduct research to determine both quality of live and cost effectiveness issues

3. Compile lessons learned on findings of studies

4. Conduct research to identify ways to improve the Medicaid reform system

Objective Seven:

To establish a quality assurance mechanism that relies on consumer input and is data-driven

Activities:

1. Identify a lead agency in the development of a standardized items/forms across agencies

2. Conduct focus groups with individuals with disabilities to identify their perceptions of the critical questions

3. Measure demographics of people on waiting lists and in institutions and track their movement 4. Disseminate information about demographics regionally and by racial/ethnic group, age, and gender

5. Develop the parameters for a provider agency listing/profile

6. Create the profile and disseminate the multimedia

Attachment 3

Cash & Counseling Focus Group

Recommendations Presented to the Personal Independence Commission

September 13, 2004

Objective:

To develop and offer a Cash and Counseling methodology for Home and Community Based Services (HCBS) in the State of Missouri

Note: The Cash and Counseling Focus Group understands that there is no new funding attached to these recommendations. This, however, is a change in methodology using existing resources.

The recommendations of the Cash & Counseling focus group are as follows:

I. Program Overview

1. Individuals would have the option to self-direct, designate a representative to direct care, or have a legally appointed guardian/representative that can direct care.
2. A cash and counseling demonstration pilot would be implemented in a rural and urban area. It is the expectation that the cash and counseling pilot be completed within one year. If the pilot is successful, it is further recommended that the cash and counseling option be available statewide.
3. If necessary, the State Medicaid agency would submit the appropriate waiver to HHS' CMS for approval.

II. Eligibility Group Criteria

1. Individuals who are deemed Medicaid eligible, and determined eligible to receive personal care services.

III. Eligibility Determination

1. Assessments for need of personal care would be completed by existing staff.
2. Cash & counseling would be deemed an option for delivery of services based on the existing needs assessment.

IV. Eligible Services & Goods

1. Must be directly related to the plan of care.
2. Anything listed in the plan of care must be directly related to a personal care type need.
3. A list of acceptable/prohibited Goods and Services that may be utilized in the development of the plan of care would be developed.
4. Anything not on the list would require prior authorization.

V. Program Outreach

1. Program would be marketed by developing an outreach plan for roll-out throughout the State (i.e., newspapers, radio, television, and various websites).
2. Use existing points of contact (discharge planners, State case managers/independent support coordinators, and various community organizations) to disseminate information about Cash & Counseling.
3. Development of outreach materials (brochure introducing program) -Funding stream required.

VI. Program Administration

1. Program administration would be handled by existing protocols for the responsible State agencies.
2. If a consumer is receiving services from multiple State agencies, they have the ability to designate one of those agencies as the lead agency for handling their case management. Appropriate State funds would be transferred to the lead agency to make the process more consumer friendly.

VII. Cashing Out

1. This program should cash out personal care related services including but not limited to personal care, homemaker chore, and respite.

VIII Case Managers

1. Participants would be able to choose between their traditional case manager or a self-directed case manager.
2. Specific training related to cash & counseling and person-centered planning would be developed.

IX. Grievances/Mediation/Appeals about Care Plan

1. Appeal process would be published, accessible, and would be conducted in person, upon request.
2. Handled by a team composed of the State agencies, advocates (CILs, for example) and a third party in accordance with State and Federal law. The members of the grievance team would be educated on the cash and counseling program.
3. Appeals process would be well defined for both services and delivery.

X. Hiring Attendants

1. Hire anyone including family members of legal age.
2. Signed document by attendant and consumer indicating both parties understand the programs and their roles & responsibilities.
3. Attendants need training whether provided by the consumer, a family member, or other available qualified community resources (CIL, manuals, and videos).

XI. Initial Target Service Areas

1. A pilot would be implemented in both a rural and urban area.

XII. Fiscal & Counseling Support

1. Consumers would have choice in the selection of fiscal and counseling support.
2. Separate agencies, in coordination, or one agency, would provide counseling and fiscal supports.
3. The State would make every effort to include both A and B above and make available to the consumer.
4. Risk planning/management would be a component of the counseling entity.
5. Training for the consumer (or agent on behalf of that consumer), as is necessary, in employer skills such as hiring, training, supervising, terminating employees, etc.

XIII. Type of Waiver

1. The State would seek CMS approval for an 1115 demonstration waiver.

XIV. Financial Management Services

1. There would be a mandatory baseline for counseling.
2. There would be a mandatory baseline requirement for the fiscal intermediary. Persons who demonstrate (to the fiscal intermediary) they have the ability to manage their budgets/finances may use another method.

XV. Health, Welfare, & Safety of Participants

1. Satisfying the federal government's requirements.

XVI. Quality Assurance

1. Ensure high quality counseling services using person-centered planning.
2. Person centered plan would include a communication plan among consumer, counseling entity, fiscal intermediary and case manager.
3. Resources directed to assure initial plan of care implemented as agreed and back-up plan established.
4. Develop individualized plan for regular contacts.
5. Ombudsman program would be initiated to support participant needs.
6. Quality assurance reviews by state agency of counseling, fiscal and case management, including monitoring of expenditure plans.
7. At the start of the demonstration, implement an outcome program evaluation that would include input from program participants and other stakeholders.
8. Program participant's evaluation of program and services. including a large survey sample and a consumer advisory group.

XVII. Office of Community Independence

1. The Office of Community Independence would make known to Missouri residents information regarding the fiscal intermediary and counseling options, their benefits, and availability to the public.

XVIII. Worker's Compensation

1. Explore methods of pooled purchasing of Worker's Compensation through a fiscal intermediary or other method.
2. Worker's Compensation and health care premium can be paid for out of a consumer's individualized budget while maintaining budget neutrality.