New Budget Developments December 22, 2008 LA Soman, CRISS

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1 e-newsletter with a Focus on Children with Special Health Care Needs in California Volume 3, Issue 2 D e c e m b e r / J a n u a r y New Budget Developments December 22, 2008 LA Soman, CRISS The State Budget in the Age of Permanent Budget Negotiations On November 6th, in a press release headed Unprecedented Decisions in an Extraordinary Situation, the Schwarzenegger Administration announced an anticipated mid-year deficit of $11.2 billion since adoption of the current fiscal year s budget in late September. Since that date, estimates of the state budget gap have widened considerably, with the 18-month deficit (i.e. from now through the fiscal year ending June 30, 2010), now estimated at almost $42 billion. In response to this crisis, the Governor called the Legislature back from its fall recess for a Special Session that opened mid-november. This session concluded business without a budget agreement on December 1, when the new Legislature (including those newly elected on November 4 th ) convened. The Governor immediately called a new Special Session with the newly seated Legislature. Since then several different budget plans have been proposed by the three main groups, none of them capable of achieving a two thirds vote in the Legislature. Meanwhile, the state s deficit has continued to grow, threatening the overall financial stability of the state. State Administration Proposal In November the Governor issued a plan proposing roughly equal cuts and new revenues to address the deficit. Many of the cuts to health and human services programs were offered by the Administration during negotiations on the current year s budget but rejected by the Legislature. The proposed cuts included: reduction in Proposition 98 funds for education of $2.5 billion; elimination of optional adult Medi-Cal benefits for dental services, acupuncture, audiology and speech, optometry, psychology, chiropractic, incontinence creams/washes, and podiatry (no change is proposed to Medi-Cal benefits for children); reduction of financial eligibility of parents of children on Medi-Cal from the current 100% of Federal Poverty Level (FPL) to 72% of FPL and reinstitute the 100 hour work rule; reduction of financial eligibility for seniors and people with disabilities from the current upper limit of (Continued on Page 4, Budget) is produced by a consortium whose members work toward the common goal of improving systems of care for children with special health care needs in California: Department of Health Care Services, Children s Medical Services Branch Los Angeles Partnership for Special Needs Children (LAPSNC) Family Voices of California (FVCA) Children s Regional Integrated Service System (CRISS) Project USC University Center for Excellence in Developmental Disabilities (UCEDD) at Childrens Hospital Los Angeles CRISS If you... would like to contribute news items, please submit via have any questions about this newsletter, please contact Kathryn Smith, MN, RN: To receive, please send an message to with in the subject line. Next Issue Date: Mar/Apr 2009 LAP SNC

2 National Council on Disabilities Assesses Rehabilitation Act s Impact on Transition Outcomes for Youth with Disabilities (TATRA Center Reference Points, 10/28/2008) The National Council on Disability (NCD) released a report titled "The Rehabilitation Act: Outcomes for Transition-Age Youth", calling on Congress and the U.S. Department of Education to make changes to current service delivery practices that will improve transition outcomes for youth with disabilities. This report is a comprehensive assessment of the impact of the Rehabilitation Act on the employment (Continued on Page 3, NCD) The Catalyst Center: A Catalyst for Change (Champions enewsletter: August 19, 2008 Edition) Responding to the Challenges of Health Care Financing According to the 2005 Survey of CSHCN, approximately 12% of CYSHCN lack health coverage, and many more are underinsured. Access to adequate costeffective health insurance is a major concern for all families, especially those with CYSHCN. Complex challenges also confront those working on the other end to improve health care financing for CYSHCN. Financing options vary from state to state, and although programs such as Medicaid and SCHIP have a federal base, each state implements federal policy differently. The health care environment in each state can be affected by factors such as demographics, private/public payer mix, cost of living, employer mix, race and ethnicity, and age distribution. Stakeholders in each state may have their own perspective about the meaning of costeffective, accessible health care coverage. This is where the Catalyst Center ( comes in. The Center provides technical assistance and research support to states and communities for improving health care financing to meet the diverse needs of CYSHCN and their families. The Merriam-Webster on-line Dictionary defines catalyst as an agent that provokes or speeds significant change or action. Meg Comeau, Project Director, sees the role of the Center as a catalyst to states by gathering information about individual state models and providing basic tools and resources to help each state make their own important changes in health care financing and insurance coverage. The four objectives of the Catalyst Center are to: 1. Cover more kids: Increase the percentage of children covered by health insurance 2. Close benefit gaps: Reduce underinsurance 3. Pay for additional services: Improve payment for important services such as respite care and care (Continued on Page 6, Catalyst) E m e r g e n c y R e s p o n s e R e s o u r c e s (TATRA Center Reference Points, 9/2/2008) NCD Releases Lessons Learned - People with Disabilities and Emergency Management This monograph represents the proceedings of National Council on Disabilities January 2008 quarterly meeting. It is part of a one-year research project on disability issues and disasters that NCD is conducting. The information in this monograph is being released at this time for use by people with disabilities, first responders, policy makers and communities who are actively involved in using lessons learned to improve their emergency preparedness efforts. The monograph can be found at Proceedings_Monograph.doc Red Cross/Crescent Engaging People with Disabilities in Planning In its 2007 World Disasters Report, the International Federation of Red Cross and Red Crescent Societies focused on the types of discrimination that occur during and after disaster has struck. One of the areas discussed was the treatment of persons with disabilities before, during, and after a disaster. The report framed the issue by stating: "[People with disabilities] are particularly at risk of marginalization and discrimination in such situations due to exclusionary policies and practices by communities and the agencies involved in providing humanitarian aid and intervention." The entire report can be found at English.pdf Emergency Preparedness Videos in ASL and Accessible Hazard Alert System The Anderson County, Texas Medical Reserve Corps provides nine short videos in American Sign Language on emergency preparedness topics via their website. Videos may be viewed at National Resource Center Prepares Diverse Communities for Emergencies The National Resource Center on Advancing Emergency Preparedness for Culturally Diverse Communities serves as a hub of resources for communities, service providers, and emergency planners. It is also an exchange site to facilitate communication, networking, and collaboration. The site also features hundreds of cross-referenced annotated resources in over 40 languages highlighting successful programs and projects. The website can be found at From: Champions for Inclusive Communities (Continued on Page 3) 2

3 (NCD, Continued from Page 2) and postsecondary education outcomes of eligible transitionage youth. The Rehabilitation Act of 1973, together with the Education for All Handicapped Children Act of 1975, set in motion policy changes that have allowed many thousands of children and youth with disabilities in the United States the opportunity to gain the educational and vocational skills needed to transition to living, working, and participating as adults in community life. According to NCD Chairperson John R. Vaughn, "The public sector VR program has been providing employment-related services to young adults with disabilities for decades, and currently serves more than 50,000 youth each year, but the results of the study confirm that relatively little is known about the extent and effectiveness of VR transition services. As a result, state VR agencies continue to devote substantial resources to this population without the benefit of methodologically sound evaluation approaches. The ever-increasing number of transition-age youth with disabilities who will exit secondary education programs and attempt to enter the workforce over the next decade will create tremendous challenges for VR agencies. While many current service delivery approaches hold promise, little empirical information is available that will allow VR agencies to accurately predict the amount and type of services required to assist transition-age youth to meet their employment goals, or the outcomes that should be anticipated for individuals served through the program," Vaughn concluded. The 11 recommendations that emanate from the study are directed to the U.S. Congress and to the Rehabilitation Services Administration (RSA), the Office of Special Education Programs, and the National Institute on Disability and Rehabilitation Research (NIDRR) within the U.S. Department of Education. Some of those recommendations include: 1.Congress should change existing VR transition legislation and policy to require that VR services be made available to eligible youth no later than three years before an adolescent or young adult exits from secondary education. 2. Congress should authorize and allocate sufficient funds to support the development of a multifunctional transition unit in each state VR agency. 3. RSA, NIDRR, and state VR agencies should design, implement, and evaluate a tiered structure for services delivered by VR counselors working with transition-age youth. More information about the report is available at E m e r g e n c y R e s p o n s e R e s o u r c e s ( c o n t. ) Emergency Management Planning Guide for Special Needs Population from FEMA A guide for state, territorial, tribal and local emergency managers to use in the development of emergency operations plans (EOPs) that are inclusive of the entire population of a jurisdiction of any size. This guide specifically provides recommendations for planning for special needs populations. The entire document can be downloaded in text at media/2008/301.txt or in PDF at pdf/media/2008/301.pdf. Assisting People with Disabilities During Disasters Ready, Willing & Able is providing a free, professional, 2- hour introductory online training course that will allow participants to become familiar with the needs of persons with disabilities during a disaster. The course is primarily designed for public health and hospital staff, health professionals, disaster preparedness managers, emergency response workers, and personnel working with people with disabilities. Additional information can be found at CourseDetails/CourseDetailsForm.aspx? tabid=62&courseid= Emergency Management Research and People with Disabilities: A Resource Guide This online publication from the National Institute on Disability and Rehabilitation Research (NIDRR) provides a listing and description of research projects funded by the federal government and nonfederal entities, research recommendations that have come out of conferences on emergency management and disability, and a bibliography of relevant research publications. This report is available on the U.S. Department of Education's Web site at: Assisting Individuals with Mental Health Needs in Times of Emergencies The Inter-Agency Standing Committee (IASC), formed by the UN in 1992, has issued guidelines for humanitarian responders on planning and coordinating responses to protect individuals with mental health and psychosocial needs during emergencies. This report offers guidelines to set up a multi-sectoral, interagency framework response effort. The report can be found at guidelines_iasc_mental_health_psychosocial_june_2007.pdf From: The Disability Law & Policy e-newsletter (Continued on Page 4) 3

4 (Budget, Continued from Page 1) 127% of FPL to 100% of FPL to align with SSI/ SSP; reduction of eligibility and benefits for immigrants by eliminating state-funded benefits other than Emergency Medi-Cal for recent immigrants here less than five years and for immigrants in the PRU- COL category, including children (children and adults in both these groups of immigrants would continue to be eligible for Emergency Medi-Cal); Implementation of monthly eligibility determinations (from the current six-month determinations) for Emergency Medi-Cal for undocumented immigrants, including children; reduction of Purchase of Service payments to Regional Center providers by 3% (this is a reduction in payment amounts, not in rates) and reduction of Regional Center operating budgets by 3%; and reduction of state participation in wages for IHSS staff to the state minimum wage of $8 and elimination of domestic and related services to persons with higher functional levels. In December the Governor also ordered layoffs and mandatory furloughs for state workers. The Governor proposed new revenues through a temporary state sales tax increase from 5 percent to 6.5 percent for three years; broadening of the sales and use tax to include certain services; application of the sales and use tax rate to amusement parks and sporting events; imposition of an oil severance tax; and an increase in alcohol excise taxes by five cents a drink. The proposed tax increases would require a twothirds vote in the Legislature; failing that, they would require placement on a Special Election ballot. The Governor s deficit plan was not supported by either Democrats or Republicans. Republican Proposal In mid-december the State Republicans proposed a much simpler plan: $22 billion in cuts, almost half in funding for K-12 schools, and a transfer of funds from Proposition 10 (tobacco tax) and Proposition 63 (mental health funds) to the State General Fund, shifts that would require approval by the state s voters. Other proposed cuts include reductions in payments to SSI recipients and reduction of the Legislature's operating budget across the board by 5%, including lawmakers' salaries. The Republicans have rejected any proposals to increase taxes. The Republican plan could not draw either the Governor s support or Democratic votes. Democratic Proposal Last week the Democrats proposed an $18 billion defi- (Continued in Next Column, Budget) E m e r g e n c y R e s p o n s e R e s o u r c e s ( c o n t. ) At-Risk Populations and Influenza Pandemic: Planning Guidance for State, Territorial, Tribal, and Local Health Departments The Association of State and Territorial Health Officials (ASTHO) issued this document that provides links to a variety of resources offering guidance including how to partner with "at-risk" populations and providers, identifying at-risk populations in the community, and involving people with varying abilities in preparedness planning and data. Among other topics, it also covers continuity of operations plans during a pandemic, home care during a pandemic, evaluation of preparedness, and mapping populations in a community. The document can be found at: ASTHO_ARPP_Guidance_June3008.pdf Website Helps Communities Prepare for Emergencies (Champions enewsletter: August 05, 2008 Edition) A recently launched website will help culturally diverse communities better meet their preparedness needs. The National Resource Center ( serves as a hub of resources for anyone to use and encourages communication, networking, and collaboration among communities in order to strengthen their resilience and organization in the event of a disaster. (Budget, Continued from Previous Column) cit plan, about evenly divided between cuts and new revenue. Proposed cuts include: reduction in Proposition 98 funds for education of $2.5 billion (the same as proposed by the Governor), with additional cuts to the UC and Cal State systems; reduction of SSI/SSP grants in 2009 to the 2008 level and suspension of the state COLA; reduction of Purchase of Service payments to Regional Center providers by 3% (a reduction in payment amounts, not in rates) as proposed by the Governor, and reduction of Regional Center operating budgets by $3 million in the current fiscal year and $12.2 million next fiscal year; cuts to local public safety programs; and reductions in state employee funding (requires negotiation through the collective bargaining process). In an interesting move, the Democrats proposed a series of revenue increases designed to get around the state s Proposition 13 requirement of a two thirds majority (Continued on Page 5, Budget) 4

5 (Budget, Continued from Page 4) vote on any tax increase a requirement unable to be met in the Legislature with its current political makeup. The proposal would eliminate certain taxes and replace them with a mix of other taxes and user fees earmarked for specific purposes such as transportation. The Democrats contend that the specific design and earmarking of the proposed taxes and fees eliminate them from the application of the two thirds majority vote, thus evading the political gridlock in the Legislature. This deficit plan was approved on a party line vote by Democrats, but the Governor has refused to sign the bills enacting the proposal. What Happens Now? All indications as of this writing are that the Governor is actively negotiating with the Democrats on their proposal, while seeking concessions on issues important to him, including relaxation of regulations he considers onerous to business. The Governor has said that he hopes to reach a consensus before Christmas on a deficit package and that he and the Democrats are moving toward an agreement on a revised version of the Democratic proposal. Looming just on the horizon is January 10, 2009, the date on which the Administration will have to present its draft budget for Fiscal Year , with another $25 billion or more in red ink. Breaking News: Proposed Enrollment Cap for Healthy Families Program Averted In November the executive director of MRMIB, the state agency that oversees the Healthy Families Program, had announced her intention to freeze enrollment in the Program by the end of this year. Healthy Families is underfunded by about $17 million this fiscal year and to meet its budget MRMIB was considering putting all children who apply for Healthy Families coverage on a waiting list beginning December 18, Prior to the scheduled vote on December 17 th, First Five California stepped in and agreed to provide the funding to keep the Program open to new enrollment. The proposed freeze would have resulted in more than 162,000 eligible children being denied Healthy Families coverage by the end of the current fiscal year, June 30, The Healthy Families Program currently provides health insurance coverage for over 900,000 children in California, and enrollment is expected to accelerate as a result of the recession, as more employers eliminate health coverage and increasing numbers of workers lose their jobs. Previous issues available at Catalyst Center Requests Family Financial Hardship Stories (Champions enewsletter: August 19, 2008 Edition) The Catalyst Center is collecting personal stories from families on the financial hardships experienced in caring for their child with special needs. The Center plans to use direct quotes from the stories, as well as information from them about the causes and consequences of family financial hardship to illustrate the importance of developing solutions to these problems. If you have a story you would like to share, or know of a family who does, visit the Catalyst Center s website ( to download a PDF of the survey. Article The Relationship Between Language Barriers and Timely Care for Children in Managed Care Medicaid (MCH Alert, 8/22/2008) "Language barriers are associated with parental report of delayed access to illness and routine care for children in managed care Medicaid," state the authors of an article published in the July 2008 issue of the American Journal of Managed Care. Timeliness of care has been cited by the Institute of Medicine as a key component of quality health care. Delayed access to care is associated with increased morbidity, longer hospital stays, increased costs, and increased emergency department use. Language may play an important role in the existence of racial and ethnic disparities in access to timely care. The objective of the study described was to examine the association of race/ethnicity, parents' primary language, difficulty communicating with health professionals, and use of interpreters with receiving health care services among children covered by Medicaid. The cross-sectional study used data from the Consumer Assessment of Health Plans Survey conducted by the Washington State Medical Assistance Administration for children covered by the state's Medicaid program. Medicaid enrollment data were used to identify children meeting the following criteria: age 14 or younger; continuous enrollment in Medicaid from September 1999 through February 2000, with no more than a 1-month break; and English or Spanish listed as the primary language. Primary outcome measures were timeliness of illness care and of routine care. The final study sample included 5,142 children. The authors found that: * Compared with white children, there were no significant differences in frequency of receiving illness or routine care as soon as wanted for children of other races and ethnicities. * Children had a significantly decreased frequency of get- (Continued on Page 7, Language) 5

6 (Catalyst, Continued from Page 2) coordination that insurance generally does not cover 4. Build capacity: Enhance funding for the CYSHCN health infrastructure Health Insurance & Financing Toolkit: Tools You Can Use The multidisciplinary team at the Catalyst Center creates and disseminates information in response to the interests and requests from a broad range of stakeholders, including families, providers, advocates, State Title V and Medicaid program staff, and health insurers. Drawing from different areas of expertise, this talented, five-person group has created technical briefs on many topics including Catastrophic Relief funds for CYSHCN, Medical Debt ( Payer of Last Resort ), and the Family Opportunity Act s Medicaid buy-in option. A recent publication, Designing Evaluation Studies of Care Coordination Outcomes for Children and Youth with Special Health Care Needs, ( toolkit/designing-evaluation-studies-care-coordinationoutcomes-children-and-youth-special) responds to a concern from stakeholders about how to sustain the use of care coordinators within the medical home. Care coordinators exist in various forms in states and communities, and there is an increasing need to evaluate the cost/benefit of investing in them. This publication provides stakeholders with a guideline for creating their own customized evaluation study that responds to the variability in care coordination activities between and within different organizations, rather than giving formulaic instructions. Data, Innovation, and Inspiration The Catalyst Center s State-at-a-Glance Online Chart Book ( catalyst/chartbook) on Coverage and Financing of Care for CYSHCN helps users gain a better understanding of the health care financing system and learn from the innovative practices occurring in other states. It allows states to access their state page and compare it with other states. Simple and easy to use, the online Chart book provides helpful tips on how to understand and apply the data. The Get Inspired section includes descriptions and samples of interesting state practices with a focus on implementation and innovation. The Chart book contains information gathered from various sources, including State Title V leaders, Medicaid staff, members of Family Voices ( and the Family to Family Health Information Network ( Child and Adolescent Health Measurement Initiative (CAHMI) Data Resource Center ( and (Continued in Next Column, Catalyst) (Catalyst, Continued from Previous Column) the U.S. Census Bureau. Another interactive way for individuals to gain immediate technical assistance from the Catalyst Center is to participate in a Topical Conference Call. The Catalyst Center is always open to suggestions on topics. The schedule of calls can be found on the Catalyst Center website. Families: The First Line of Defense While gathering information for the Chart Book, Ms. Comeau reported that families provided an enormously helpful reality check for the Catalyst Center. Families were interviewed about the content, and the information was returned to the interviewees for accuracy before it was published. Now that the Chart Book is online, it is easily updated for accurate, up-to-date information. The review committee for the Chart Book included eight people, four of whom were parents of CYSHCN. Every effort is made by the Catalyst Center to deliver tools and resources that can help families to make informed decisions and actively participate in improving cost-effective, high-quality care on the policy level. What is Healthcare Quality? Ms. Comeau shared a quotation by Charles J. Homer, MD, MPH, CEO, of the National Initiative for Children s Health Care Quality (NICHQ), taken from a presentation given at the New England Alliance for Children s Healthcare Summit in Lowell, MA. It was entitled, Children s Healthcare Quality: National and State Perspectives. What is quality? The Right Care The Right Way The Right Time For Every Child and Family Aims of the health care system: Safe Effective Efficient Timely Patient- and Family-Centered Equitable The Catalyst Center continually strives to promote this standard for the health care system by providing its stakeholders with high-quality tools and resources needed to ensure that families of CYSHCN have adequate access to public and/or private insurance to pay for the services they need. For more information, contact: Meg Comeau, M.H.A., Project Director The Catalyst Center Health & Disability Working Group 374 Congress St. Suite 502 Boston, MA , ext

7 (Language, Continued from Page 5) ting illness or routine care as soon as wanted if the parent's primary language at home was not English or if the parent ever had a problem communicating with the child's health professional because of language. * Compared with children whose parents did not need an interpreter, children whose parents always got an interpreter when needed were reported to significantly more often receive illness and routine care as soon as wanted; there was no significant difference for those whose parents did not always get an interpreter when needed. The authors conclude that "our results suggest that policies to address language barriers for the families of pediatric patients may positively impact the timeliness of care received." Galbraith AA, Semura JI, McAninch-Dake RJ, et al Language disparities and timely care for children in managed care Medicaid. American Journal of Managed Care 14(7): Abstract available at: ArticleAbstractOnly.cfm? Menu=1&ID=10539&AbstractOnly=yes. Report Presents Analysis of National Survey Data on Access to Care and Children s Health Insurance Status (MCH Alert, 8/22/2008) A Needed Lifeline: Chronically Ill Children and Public Health Insurance Coverage discusses findings from a state-by-state analysis of children's access to health care services, especially children with special health care needs (CSHCN). The report, prepared for the Robert Wood Johnson Foundation by researchers at the University of Minnesota's State Health Access Data Assistance Center, draws on data from the State and Local Area Integrated Telephone Survey and the 2007 National Health Interview Survey to determine whether children who have public or private insurance coverage access health care services differently than children who are uninsured. The report contains a series of charts with data on the proportion and number of children (from birth through age 17) by insurance status, including those who have public vs. private insurance, those who visited the doctor's office within the past 12 months, and those who received a well-child checkup within the past 12 months. Data on the numbers and percentages of CSHCN are also provided by insurance status and state and include information on those whose care was delayed or foregone, those who have a personal doctor, and those who did not receive all needed mental health care. Descriptions of the methods and resources are included. The report is available at covertheuninsured.org/pdf/aneededlifeline.pdf. Notice of Release of Data from the 2007 Survey of Adult Transition and Health (CDC NCHS, 7/15/2008) On July 15, 2008, the National Center for Health Statistics (NCHS) released microdata from the 2007 Survey of Adult Transition and Health (SATH). This survey was sponsored by the Health Resources and Services Administration s Maternal and Child Health Bureau (MCHB). The 2007 SATH used a follow-back survey design to interview 1,865 eligible cases originally included in the 2001 National Survey of Children with Special Health Care Needs (NS- CSHCN). In 2001 these children were 14 to 17 years of age and lived in English-speaking households; in 2007, the same subjects were young adults 19 to 23 years of age. The primary goals of the SATH are to examine their current health care needs, and better understand their transition from pediatric health care providers to health care providers who treat adults. The follow-back design feature allowed many variables from the 2001 NS-CSHCN public use file (PUF) to be included on the 2007 SATH PUF for each case. The data file is posted at: ftp://ftp.cdc.gov/pub/health_statistics/nchs/slaits/ sath2007/dataset/ A list of variables on the SATH data set is available at: ftp://ftp.cdc.gov/pub/health_statistics/nchs/slaits/ sath2007/formatted_freqs/ SATH_formatted_freqs.pdf Massachusetts Family-Professional Partners Institute (Champions enewsletter: September 03, 2008 Edition) Families of children and youth with special health care needs (CYSHCN) can be invaluable assets to the health care system. The Family-Proessional Institute s ( goal is to form partnerships between family members and health related organizations to improve systems of care. The Institute serves as a "broker" that can create, facilitate, and support these partnerships. Piloting a New Program This effort began when the Massachusetts Consortium for CSHCN became interested in family participation in both Consortium activities and within health related organizations. Families, family organizations, and Consortium members were surveyed on the benefits of family involvement and the results were clearly positive. The Consortium decided this was an idea worth testing and piloted the Family Partners Initiative (FPI). (Continued on Page 8, Massachusetts) 7

8 (Massachusetts, Continued from Page, 8) Low-Hanging Fruit The first step of the pilot was to identify health care organizations that might be interested in developing a partnership with a family member. Suzanne Gottlieb, Director of Family Initiatives at the Massachusetts Department of Public Health, called the first organizations low-hanging fruit that were clearly ready for a family partnership to be implemented. At a statewide meeting, an invitation was extended, six organizations were chosen, and the pilot was put into action. Matching Families and Organizations: Developing the Model The next step was to match family members and organizations. Each organization had a specific need, and just the right family member had to be chosen to fill that need. Organizations with existing connections to family members were invited to identify possible family partners. The other organizations were assisted by the Consortium staff and members of the Family Participation Working Group to recruit potential family partners. After the "matches" were made, training, support, and on-going mentoring were offered to both family and professional partners. The MA Department of Public Health then contracted with New England SERVE, parent organization for the Consortium, to move from a pilot to a tangible institution by creating the Family-Professional Partners Institute, funded through the New Freedom Initiative grant. In all, 16 partnerships were developed. They included large and small organizations, clinical settings, health plans, universities, and community-based organizations which serve vulnerable and immigrant populations. Family partners served in a variety of roles, from clinical practice advisors to faculty members. A key consideration in selecting these organizations was their willingness to continue the partnerships after grant funding ended. To date, 13 of the 16 organizations have employed their family partners in some capacity. Both organizations and family members deem the initiative a success. There have been concrete improvements to services for CYSHCN and their families. Family and organizational partners have a deeper and more informed appreciation of each other s skills, challenges, and contributions. Fourteen of the family partners were individuals who had not previously taken on leadership roles. An unexpected benefit has been the development of an active family-professional network where participants can learn from each other. Serving the Haitian Community One shining example of a family-professional partnership involved the Haitian American Public Health Initiative (HAPHI), a program that serves Haitian (Continued in Next Column, Massachusetts) (Massachusetts, Continued from Previous Column) families throughout the Boston area. Because members of the Haitian community may view having a child or youth with a special health care need as something to be kept hidden, children and families do not always get the care and support they need. The family partner identified by this organization, herself a member of the Haitian community, had a visible role within the organization and has been able to share resources and information with other families. A second partnership was established with the Medical-Legal Partnership for Children at Boston Medical Center (MLPC). By working collaboratively with staff in the legal clinics, the family partner helped broaden the staff s understanding of the challenges that many Haitian clients face. Measuring and Learning from Success Participants in the Family- Professional Partners Institute feel they have been part of an exciting and innovative venture. Formal evaluation including pre and post assessments show that the partnerships were successful in accomplishing many of the established objectives. Evaluations conducted at the completion of each partnership taught Institute staff valuable lessons that were incorporated into the next round of partnerships. The Institute has published a workbook called Structure & Spark! ( pub_structure.htm) that serves as a "how to" manual and incorporates the best of the knowledge gained. Many valuable lessons have been learned from the Family- Professional Partners Institute: The most successful family-professional partnerships begin with organizations that have a strong internal champion for the program. The brokering role played by the Institute facilitates partnerships that otherwise would not have happened. All partners need and appreciate on-going mentoring and support. Connecting families to one another is a powerful way to help them feel part of a larger system and to grow their skills to effect change. Building relationships with culturally diverse communities is a complex and sometimes difficult process, but one that has excellent results. The Institute created a forum for the exchange of information among community leaders, policy makers, and families. 8

9 Article Evidence for Benefits of the Medical Home for CSHCN (MCH Alert, 10/24/2008) "The evidence in this review supports our hypothesis that CSHCN [children with special health care needs] receiving care in an MH [medical home] experience better outcomes than children receiving care in non-mh settings," state the authors of an article published in the October 2008 issue of Pediatrics. Research over three decades, as well as families' experiences, have led to a model of family-centered, community-based care for CSHCN termed the Medical Home. The attributes of care provided through an ideal MH are accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally effective. The Maternal and Child Health Bureau (MCHB) developed an integrated set of six core objectives for CSHCN, including the following MH objective: children and youth with special health care needs receive coordinated, ongoing, comprehensive care within an MH. This article focuses on that objective and examines the existing evidence on the impact of the MH on health and other related outcomes for CSHCN. The authors conducted a systematic search of the medical literature through MEDLINE and nursing/allied health literature through CINAHL. Inclusion criteria specified (among other things) that studies had to be quantitative, focused on CSHCN from birth through age 18 living in the United States, published between 1986 and November 2006 in a peer-reviewed journal that included abstracts written in English, and based on primary or secondary data analysis. The authors selected 30 articles reporting on 33 distinct studies. Of these articles, six were randomized controlled trials, one was a pre-post intervention with comparison, four were prepost interventions without comparison, three were cohort studies, and 16 were cross-sectional. The authors' findings are as follows: Effectiveness. Half of the comparison group studies investigating effectiveness resulted in positive findings. Both associational studies on effectiveness found some positive results. Efficiency. Thee of the six comparison group studies investigating the impact of MH on efficiency found positive effects on MH activities. Two of the three non-comparison studies found associations between MH activities and efficiency. Family Centeredness. Four of the six comparison group studies investigating family centeredness found positive effects. Two non-comparison studies found positive associations. Cross-sectional studies found generally positive associations. (Continued on Page 10, Medical Home) New Report on Severe Hardships for Middleclass Families Raising Children with Disabilities (TATRA Center Reference Points, 9/8/2008) Families with children with disabilities are struggling to keep food on the table, a roof over their heads, and pay for needed health and dental care. According to a new study of 28,141 households by the University of North Carolina at Chapel Hill, these challenges are now falling on middleincome households and not just on poor families, as previous research has found. "The bottom line is that U.S. families raising children with disabilities are reporting severe hardships at rates that are chilling, including families that are solidly middle-class," says Dr. Susan L. Parish, the study's lead investigator and an assistant professor in the UNC School of Social Work. "We were shocked to find such high rates of hardship among upper-income families." The study, which is based on 2002 data from the National Survey of American Families, is being published in this month's journal "Exceptional Children. A news release on the report may be found at uncnews.unc.edu/news/health-and-medicine/unc-studychilling-hardship-rates-among-families-raising-disabledchildren.html From: AAIDD F.Y.I., September 2008 Article Identifying CSHCN Programs' Steps and Processes to Achieve Culturally and Linguistically Competent Policies (MCH Alert, 9/19/2008) "Achieving cultural and linguistic competence is a long journey.based on this query of CSHCN [children with special health care needs] programs, it is apparent that states are at various points along that journey," write the authors of an article published in the September 9, 2008, issue of the Maternal and Child Health Journal. The need for culturally and linguistically competent health and mental health systems has recently been reaffirmed by the highest levels of U.S. government, the National Academy of Science, independent commissions, and professional associations and accreditation organizations. Addressing the cultural and linguistic needs of the U.S. population is challenging because of the population's increasing diversity. This descriptive study was intended to identify actual action steps and processes of CSHCN programs to develop, implement, sustain, and assess culturally and linguistically competent policies, structures, and practices. The authors used two products provided by the National Center for Cultural Competence (NCCC) for programs serving children and youth with special health care needs and their families to support their progress in the areas of cultural and linguistic competence. Respondents were asked to report on whether their programs en- (Continued on Page 10, Policies) 9

10 (Policies, Continued from Page 9) gaged in activities related to (1) the processes delineated by the NCCC as steps toward organizational change to implement cultural and linguistic competence and (2) service system actions at the organizational level that reflected the NCCC model for achieving organizational cultural and linguistic competence. Fortytwo state and territorial Title V CSHCN directors participated in the study. The authors found that Most programs (78%) did not have a cultural competence committee or task group with representatives from policymaking, administration, practice/ service delivery, and consumer levels. Most programs (76%) reported that their mission, vision, and/or principle statement commits to cultural competence. Most programs (63.4%) had a mechanism in place to track and document community demographics and service access and utilization of its constituent populations. Most programs (58.5%) indicated that their agencies had not completed a comprehensive cultural competence agency self-assessment. Most programs (72.5%) indicated that representatives of the service-delivery system made adapta- (Continued in Next Column, Policies) (Medical Home, Continued from Page 9) Timeliness. Seven non-comparison studies found positive associations between MH and timeliness of care. Health/Functional Status. Half of the comparison group studies found that MH-related interventions had a strong effect on health status. Two noncomparison studies found relationships between MH activities and better functional status. Family Functioning. One non-comparison study and three cross-sectional studies found positive associations between MH and family functioning. Cost. One study found that MH reduced cost, but significance was not measured. The authors conclude that "although results were not universal, positive impacts were found for MH activities on each outcome studied." Homer CJ, Klatka KK, Romm D, et al A review of the evidence for the medical home for children with special health care needs. Pediatrics 122(4):e922- e937. Abstract available at pediatrics.aappublications.org/cgi/content/ abstract/122/4/e922. (Policies, Continued from Previous Column) tions to ensure culturally and linguistically competent service delivery. Slight over half of the programs (51.2%) indicated that the service delivery system had a policy for ensuring that their staff, contractors, and family consultants were representative of the culturally, linguistically, racially, and ethnically diverse groups within the geographic locations served by the programs. Most programs (80.5%) indicated that their service delivery system had policies and dedicated resources for interpretation and translation services. Most programs (65.9%) indicated that representatives of the service delivery system conducted outreach activities within culturally, linguistically, racially, and ethnically diverse communities. The authors conclude that "while many programs are taking isolated actions in response to population needs, the difficult work of deep organizational change that will lead to changes in policy and infrastructure is not wide-spread." Telfair J, Bronheim S, Harrison S Implementation of culturally and linguistically competent policies by state Title V Children with Special Health Care Needs (CSHCN) Programs. Maternal and Child Health Journal [published online ahead of print on September 19, 2008]. Abstract available at p=aec570c6c b880eb65aa358eae&pi=0. The USC UCEDD Presents: Epilepsy and Seizure Disorders: A Resource Guide for Parents The USC University Center for Excellence in Developmental Disabilities at Childrens Hospital Los Angeles has completed a Spanish version of Epilepsy and Seizure Disorders: A Resource Guide for Parents. The 48-page guide was created with parent and professional input in order to help parents of children with epilepsy and/or a seizure disorder better understand their child s condition. The guide is divided into 4 sections: Understanding Epilepsy and/or Seizure Disorders; Health Care for my Child: Access to Care/Access to Services; Advocacy and Support; and Forms and Tools. Development of the guide was partially funded by MCHB, HRSA, DHHS under Project Access. To download a PDF copy of the Parent Resource Guide in Spanish and/or in English, please visit the Epilepsy Foundation of Northern California s website, To order a printed copy of the Guide, please contact the Epilepsy Foundation of Northern California at (800) For more information on Project Access, please contact Cary Kreutzer, MPH, RD, Project Director at (323) , or 10

11 A Letter from Kids as Self Advocates (KASA) To Whom It May Concern, I am writing this note to all young men and women within the disabled community. My name is Collin Pugh and I am a proud member of the group Kids as Self Advocates (KASA). We are a group of young adults, ranging in age from fourteen to twenty five, whose mission is to give a voice to those people who have been ostracized or ignored by society for one reason or another. Our goal is to advocate for children and youth with special health care needs. Although our group is not made up of trained professionals, we are a collection of passionate young people who aspire for change. We aspire to make people aware of our rights and the resources that our available to secure them. In the interest of enhancing our credentials, the group has begun formal training sponsored by the organization Family Voices. Our first formal training focused on how to be an effective peer mentor. The overarching theme that resonated with our group was that good peer mentors must be good listeners. Along with being a good listener, our group was reminded that being a good mentor is providing culturally and linguistically individualized support to assist their peer. While mentors may not have all the answers, they are like a road map because they assist individuals with getting the necessary information about their options, help navigate systems of service and discuss other outreach possibilities. Another valuable lesson our group took away from our training was the realization that any good mentor must be a good self evaluator. By a good self evaluator, I am referring to someone who can identify and acknowledge their strengths as well as their weaknesses. It was through the self assessment we took in training that helped our group realize two very important ideas. The first was that we are all constantly growing and evolving. To that end, we also came to understand that we do not have all the answers individually or as a group, but we are inspired to find them. Lastly, the training made us mindful of the fact that we all have our own filters which cause us to perceive the world differently. The point about perception is paramount for two reasons. The first is that peer mentors need to understand that everyone does not see the world the same way they do. Therefore, it is imperative to remain open minded and empathetic to each individual s situation. Second, it gives us faith that the system will continue to improve because, like perceptions, it can change. In closing, I hope this letter has made you think not only about your life, but the lives of those around you. If you are interested in joining our group as we try to impact change in our society, please feel free to contact us. We welcome fresh insights and new energy. Sincerely, Collin Pugh on behalf of CA KASA group If you know a youth who would like to be a member of Family Voices KASA, please contact Judith Lesner, Youth Facilitator at or (510) Make Sure Your Voice is Heard in Sacramento! Family Voices of California invites you to join us in Sacramento for We Can Do It! our annual Health Summit and Legislative Day on March 10 and 11, This is your opportunity both to learn what is happening at the State level and to share your story with key legislators and decision makers. This year's Health Summit will have a special focus on two key services which are threatened: Medi-Cal and In Home Support Services (IHSS) There is no fee. There are limited Transportation and Lodging Scholarships for families. For more information please contact: The Summit is funded by a grant from U.S. Dept of Health and Human Services, Health Resources Services Administration, Maternal Child Health Bureau. Resource for Reducing Health Disparities (Champions enewsletter: August 05, 2008 Edition) The American Journal of Public Health has published an abstract ( abstract/ajph v1) of a study that is the first to support multi-level research on the causes of health disparities. This is no small task. The researchers from the National Institutes of Health sponsored Centers for Population Health and Health Disparities ( populationhealthcenters/about.html) are partnering with a variety of organizations to disseminate the findings and guide clinical practice in communities. It is hoped that communities will find the results significant and will use them to reduce local health disparities. Community Health Status Indicators Project (Champions enewsletter: August 05, 2008 Edition) The Public Health Foundation is dedicated to creating healthy communities throughout the United States. They do this by connecting communities to, and helping them effectively use, information that will help improve performance. One resource that helps them do this is the Community Health Status Indicators Project ( with organized health profiles for each of the 3,141 counties in an easy-to-find website. This allows you to compare your county s health data with that of other counties in the nation and ensure your state s efforts are measuring up to the Healthy People 2010 goals.

12 CDC Study Finds Racial/Ethnic Health Disparities in People with Disabilities (TATRA Center Reference Points, 10/27/2008) In recognition of Disability Employment Awareness Month, the October 3 edition of the Centers for Disease Control and Prevention's (CDC) Morbidity and Mortality Weekly Report highlights findings on the health of people with disabilities. This study found that among adults with a disability, Black, Hispanic and Native Americans report fair or poor health at disproportionately higher rates compared with White and Asian Americans. The report is available at mmwrhtml/mm5739a1.htm?s_cid=mm5739a1_e America's Children in Brief: Key National Indicators of Well-Being, 2008 (CFK Update, 8/6/2008) Here's a cross-cutting look at indicators of health and well-being, from the Federal Interagency Forum on Child and Family Statistics. They found math and reading scores are up among fourth and eighth graders, childhood deaths from injuries are down, as is the share of eighth graders who smoke daily. However, the teen birth rate is rising for the first time in 15 years and the proportion of U.S. infants born at low birth weight is also increasing. The report includes indicators on child poverty, health care, housing and at-risk behavior. Issue Brief Describes Benefits of Collocation (Champions enewsletter: July 15, 2008 Edition) The new Commonwealth Fund issue brief Colocating Health Services: A Way to Improve Coordination of Children's Health Care? ( publications_show.htm?doc_id=691922) shows that pediatric practices can colocate a variety of services, from mental health care to nutritional counseling, in the same setting and therefore address the often overlapping needs of children and their families. The brief describes the types of services that are likely to be colocated, alternative models of colocation, and benefits and costs to providers and patients. Early Childhood (CFK Update, 8/6/2008) The bill is "great news" says the National Association for the Education of Young Children (NAEYC), citing the Early Childhood Educator Provisions that offer loan forgiveness and degree incentives for early childhood professionals as well as grants to states to create professional development systems for early childhood educators. Materials will be posted online soon, at U.S. Health Care Headed in the Wrong Direction (Champions enewsletter: August 05, 2008 Edition) The Commonwealth Fund s National Scorecard on U.S. Health System Performance ( aboutus_show.htm?doc_id=693648) examines the alarming information that health care in the United States is slipping backwards. The Scorecard finds that in nearly every area measured, the health care system is faring worse than it did two years ago. The report as a whole presents a convincing reason for closely examining the current system. If your organization needs to make some widespread changes in financing, organization, and delivery, this is one report you will want to read. Available at: New Edition of Community Services Locator Released (MCH Alert, 8/1/2008) The Community Services Locator is an online directory for finding services for children and families in the communities in which they live. The locator, produced by the MCH Library, may be used by service providers and families to find available health, mental health, family support, parenting, child care, and other services. Topics include education and special needs, health and wellness, mental health and well-being, family support, parenting, child care and early childhood education, and financial support. A new A-Z Resources and Services Index offers another avenue for navigating the locator and the library's Web site. The locator is available at KnowledgePaths/kp_community.html. The MCH Library welcomes feedback on the usefulness and value of the Community Services Locator. A feedback form is available at KnowledgePaths/feedback.html. Toolkit Explores Policy Development (Champions enewsletter: August 19, 2008 Edition) A new toolkit released by CityMatCH ( citymatch.org/ toolkit_letter.php) Best Practices and Policies Action Group contains resources that can be used at state and local levels to advance policy development in areas of maternal and child health. The toolkit includes models for strengthening relationships with community collaboratives, advice on how to present to legislators and other key decision makers, tips for how to work with the media, and examples of how CityMatCH members have succeeded in developing and implementing policy change in their communities. 12

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