Cathy Cope Melissa Hulbert Centers for Medicare & Medicaid Services



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Missouri

Primary Purpose


The grant’s primary purpose was to conduct a study to determine the feasibility of developing and implementing a comprehensive system of community services and supports under a Section (§) 1915(c) waiver for children with serious emotional disturbance (SED) who would otherwise require care in a psychiatric residential treatment facility.

The grant was awarded to the Missouri Department of Mental Health.


Results


The State will not be able to implement the comprehensive system described above because it has determined that it cannot meet the cost-neutrality requirements of a §1915(c) waiver.

Lessons Learned and Recommendations


  • HIPAA requirements regarding the sharing of personal health care information made it difficult to create a children’s data warehouse. The State has elected to pursue a system that will focus on aggregate data supplied by state agencies to inform policy and budget development.

  • CMS should amend the recent guidance regarding cost-neutrality for §1915(c) waivers, which severely restricts the costs that may be used (i.e., only inpatient hospital services) to offset the cost of home and community-based services. This requirement makes it difficult for states to achieve the cost-neutrality needed to provide psychiatric waiver services in the community to youth under age 21.

  • CMS should strengthen the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) screening requirements related to children’s mental health needs by increasing the indicators of mental health and substance abuse issues or by mandating that physicians assess these issues.

  • Congress should amend Medicaid law to allow coverage for services in Institutions for Mental Diseases.

Products


Grant staff produced a report: Children in State Custody Solely for Mental Health Needs and More Comprehensive Strategies for System of Care Development. It includes an analysis of state expenditures for children’s services, including expenditures per child before and after entering state custody. The report also outlines the pros and cons of expanding the State Plan rehabilitation option, pursuing a §1915(c) or a §1115 waiver, and implementing the Voluntary Placement Option under Title IVE within the State. This document provides a blueprint for the development of additional children’s community-based mental health services and makes recommendations to the State to expand home and community-based services for children with SED.

Texas

Primary Purpose


The grant’s primary purpose was to explore the feasibility of providing community-based treatment for children with severe emotional disturbance (SED) who are at risk of entering psychiatric hospitals for treatment.

The grant was awarded to the Texas Health and Human Services Commission. CommunityTIES of America, Inc., was a subcontractor on the grant.


Results


Results of the feasibility study showed that the State could consider implementing a Section (§) 1915(c) waiver to provide a flexible array of services and supports for children with SED as an alternative to inpatient psychiatric care. The State subsequently applied for a psychiatric residential treatment facility (PRTF) waiver demonstration grant program but did not receive one.

The Commission, in collaboration with the Department of State Health Services (DSHS), developed and submitted a §1915(c) waiver application in June 2008 to the Centers for Medicare & Medicaid Services. If approved, Youth Empowerment Services, the new waiver program, will provide home and community-based services (HCBS) for children with SED as an alternative to a hospital level of care. The waiver program was developed by DSHS with the assistance of a contractor to determine its cost neutrality.


Lessons Learned and Recommendations


Section 1915(c) waivers are potentially valuable strategies for providing home and community-based services to children with severe emotional disturbance, particularly in states where children have long stays in Medicaid-funded psychiatric inpatient facilities and/or high recidivism rates due to a lack of community services and supports.

However, the §1915(c) waiver authority was not designed to serve individuals with mental health needs. Developing a §1915(c) waiver program requires much time, effort, and stakeholder involvement to ensure that it will meet the needs of children with severe emotional disturbance. States considering whether to use a §1915(c) waiver program for this population need to develop the infrastructure to provides services and supports through the waiver. If the waiver will be implemented in the mental health system, its staff will need to develop the appropriate expertise to design and administer the waiver program.


Products


The Grantee and its subcontractor, CommunityTIES, Inc., produced three reports: (1) A Feasibility Study of Options for Children with Serious Emotional Disturbances; (2) an Implementation Report for the §1915(c) HCBS waiver option; and (3) a Final Report that summarizes the first two reports. These reports analyze how a waiver would operate and provide an overview of data on the current costs of institutional services. Together the reports provide stakeholders and policy makers with good basic information and a common point of reference for discussions regarding future program development.

Appendix

Real Choice Systems Change Grants for Community Living


Reports on the FY 2003 Grantees

I. Formative Research Reports

Real Choice Systems Change Grant Program: Third Year Report


This report describes the FY 2002 and FY 2003 Grantees’ accomplishments and progress, using information provided by the Grantees during the reporting period October 1, 2003, to September 30, 2004. The report summarizes findings from the Year Two annual reports of the 49 FY 2002 Systems Change Grantees and the Year One annual reports of the 48 FY 2003 Grantees. Data from the 9 FY 2003 Family to Family Health Care Information Center Grantees’ Year One annual reports and the 16 FY 2003 Feasibility Grantees’ Year One annual reports were also analyzed and included. The report presents examples of Grantees’ activities in four areas of systems change: (1) access to long-term services and supports; (2) services, supports, and housing; (3) administrative and monitoring infrastructure; and (4) long-term services and supports workforce. For each of the focus areas the report describes Grantees’ accomplishments, illustrates the challenges, and discusses consumers’ roles in the implementation and evaluation of activities. Available at: http://www.hcbs.org/moreInfo.php/doc/1363.

Real Choice Systems Change Grant Program: Fourth Year Report


This report describes the FY 2003 and FY 2004 Grantees’ accomplishments and progress, using information provided by the Grantees during the reporting period October 1, 2004, to September 30, 2005. The report summarizes findings from the Year Two annual reports of the 48 FY 2003 Grantees, the Year One annual reports of the 42 FY 2004 Grantees, and the Year Two and Year One annual reports of the 9 FY 2003 and 10 FY 2004 Family to Family Health Care Information Center Grantees, respectively. Data from the 16 FY 2003 Feasibility Grantees’ Year Two annual reports were also analyzed and included. The report describes grant activities in three major long-term services and supports systems areas: (1) access to long-term services and supports; (2) services, supports, and housing; and (3) administrative and monitoring infrastructure. For each of the focus areas the report describes Grantees’ accomplishments, illustrates the challenges, and discusses consumers’ roles in the implementation and evaluation of activities. Available at: http://www.hcbs.org/moreInfo.php/doc/1668.

II. Topic Papers

Real Choice Systems Change Grant Program: Activities and Accomplishments of the Family to Family Health Care Information and Education Center Grantees


This report describes the activities of the 19 Grantees funded in fiscal years 2003 and 2004 by CMS and 6 Grantees funded in fiscal year 2002 by the Maternal and Child Health Bureau. Family to Family Health Information Centers assist families of children with special health care needs. This paper describes grant implementation challenges and accomplishments, and provides information that states and stakeholders will find useful when planning or implementing similar initiatives. Available at: http://www.hcbs.org/moreInfo.php/doc/1570.

Real Choice Systems Change Grant Program: Money Follows the Person Initiatives of the Systems Change Grantees


This report highlights the work of 9 CMS Money Follows the Person (MFP) Grantees, with a focus on Texas and Wisconsin. The report describes the initiatives, and discusses policy and design factors states should consider when developing MFP programs, including developing legislation and budget mechanisms for making transfers of funds, ensuring availability of services and housing, identifying potential consumers for transition, developing nursing facility transition infrastructure, and monitoring and quality assurance. Available at: http://www.hcbs.org/moreInfo.php/doc/1667.

Real Choice Systems Change Grant Program: Increasing Options for Self-Directed Services: Initiatives of the FY 2003 Independence Plus Grantees


This report describes the activities of 12 Grantees that received Independence Plus grants in FY 2003 and used them to increase self-directed services options for persons of all ages with disabilities or chronic illnesses. Grantees encountered a range of issues while implementing the grant projects. This report provides information for states and stakeholders planning, implementing, or expanding self-direction programs, whether through solely state-funded programs or the Medicaid program. Available at: http://ww.hcbs.org/moreInfo.php/doc/2134.

Real Choice Systems Change Grant Program: Improving Quality Assurance/Quality Improvement Systems for Home and Community-Based Services: Experience of the FY 2003 and FY 2004 Grantees


The purpose of this report is to inform the efforts of states that are trying to develop and improve QA/QI systems by describing and analyzing how selected Systems Change Grantees went through this process. Nine out of the 28 states with QA/QI grants were selected for detailed analyses for this report. These states used their grants to improve QA/QI systems for individuals of all ages with various disabilities. The initiatives examined fall into six categories: administrative technology and information technology, standards for services, discovery, remediation, workforce, and public information. Available at: http://www.hcbs.org/moreInfo.php/doc/2397.

III. Summaries

Summaries of the Systems Change Grants for Community Living—FY 2003 Grantees


This document provides a 6- to 8-page summary of the grant applications for each FY 2003 Research and Development Grantee. The 48 grants are grouped in the following categories: Community-Integrated Personal Assistance Services and Supports Grants, Independence Plus Initiative, Money Follows the Person Rebalancing Initiative, and Quality Assurance and Quality Improvement in Home and Community Based Services. Available at: http://www.hcbs.org/files/35/1725/2003_FINAL_Summaries.doc.


1For participant-controlled arrangements utilizing the person-centered planning process, individual budgets, fiscal intermediary services, direct hiring of staff or an agency-with-choice model, Michigan prefers to use the term self-determination. The use of this term is intended to include and embrace a constellation of values regarding the participant’s right to control basic features of their life, such as where and with whom they want to live, what services they feel they need, and what they want to do with their time. The term self-directed may not imply these features.

2 A circle of support is a group of people who meet on a regular basis to help somebody accomplish their personal goals in life. The circle acts as a community around that person (the “focus person”) who, for one reason or another, is unable to achieve what they want in life on their own and decides to ask others for help. The focus person is in charge, both in deciding whom to invite to be in the circle, and also in the direction that the circle's energy is employed, although a facilitator is normally chosen from within the circle to take care of the work required to keep it running.

3In-Home Support Services is an agency-with-choice model available to clients enrolled in either the Elderly, Blind, and Disabled waiver program or the Children’s waiver program.

4The Independent Care Waiver Program, for persons with physical disabilities and/or traumatic brain injury; the Community Care Services Program, for elderly persons and/or those who are functionally impaired/disabled; and the Mental Retardation Waiver Program and Community Habilitation/Support Services, for persons with developmental disabilities.

5For participant-controlled arrangements utilizing the person-centered planning process, individual budgets, fiscal intermediary services, direct hiring of staff or an agency-with-choice model, Michigan prefers to use the term self-determination. The use of this term is intended to include and embrace a constellation of values regarding the participant’s right to understand and control basic features of their life, such as where and with whom do they live? what services do they feel they need? what do they want to do with their time? The term “self-directed” may not imply these features.

6The Division for Developmental Disabilities contracts with Community Centered Boards (CCBs) to offer community-based services to persons with developmental disabilities. CCBs are private nonprofit organizations designated in state statute as the single entry point into the long-term services and supports system for persons with developmental disabilities. As the case management agency, CCBs are responsible for intake, eligibility determination, service plan development, arrangement and delivery of services, monitoring, and many other functions. CCBs deliver services directly and/or contract with other service organizations. Provider agencies also contract directly with the State.

7The website is a collaborative effort of the Massachusetts Department of Mental Retardation; the University of Massachusetts Medical School, Center for Health Policy and Research; the New Jersey Division of Disability Services; the Connecticut Department of Mental Retardation; and the Rhode Island Department of Human Services.

8The National Core Indicators is a collaboration among participating member National Association of State Directors of Developmental Disabilities Services state agencies and the Human Services Research Institute, with the goal of developing a systematic approach to performance and outcome measurement.

9Since January 2008, personal service agencies providing attendant care to more than seven individuals must be licensed by the Indiana State Department of Health.

10In a medical home, a pediatric clinician works in partnership with the family and/or patient to ensure that all medical and non-medical needs are met. Through this partnership, the pediatric clinician can help the family and patient obtain and coordinate specialty care, educational services, out-of-home care, family support, and other public and private community services that are important to the overall health of the patient and family. See http://www.medicalhomeinfo.org/ for more information.

11The grant objective to develop a model as if it were a Medicaid service was a challenge because respite services were viewed as a support service rather than a therapeutic intervention and therefore not a stand-alone benefit allowable under the Medicaid State Plan. Although respite may be offered as a waiver service, waiver participants must meet institutional level-of-care eligibility criteria.

12These waivers provide intensive supports to children who are technology dependent or require intensive behavioral supports, respectively; the federal match for services provided through these waivers is about 60 percent. However, each waiver is limited to serving only 200 children at any one time and has strict eligibility criteria that screen out all but those with the most intensive service needs. Also, neither waiver supports children who have intensive physical health needs unless they also are technology dependent.


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