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Making Children a Priority Recommendations for Improving Services Submitted to Texas Legislature As required by by the
Children’s Policy Council Susan Murphree, Chair - Colleen Horton, Vice-Chair September 1, 2004 Dear Texas Legislature and Executive Commissioner Albert Hawkins; The Children’s Policy Council (Council) respectfully submits the following report, as required by House Bill (H.B.) 1478, passed by the 77th Texas Legislature, Regular Session, 2001. In keeping with our mission to promote and advocate for public policies that support children with disabilities to grow up in families, to be an integral part of their communities, and to meet their potential we have titled the report “Making Children a Priority.” The Council seeks your adoption of, and action on, the 20 recommendations included in this 2004 report. Each recommendation was selected as a priority for Texas after significant analysis and much deliberation with Council members and other stakeholders. The Council worked hard to submit a list of do-able, specific changes that would directly benefit children with disabilities and their families. Thank you for the opportunity to serve the state and the children of Texas in our advisory role to the Health and Human Services Executive Commissioner. We have been significantly supported and challenged to produce our best collective efforts by all members, including our highly qualified and dedicated ex-officio members who work within the state agencies. The Council benefited from representation from family members, youth with disabilities, private business, and community volunteers, faith-based and funding experts. We would appreciate your serious consideration of the 20 recommendations in this report, for the sake of the children. Sincerely, Susan Murphree Susan Murphree, Chair Children's Policy Council Members
Table of Contents
<<back to top>> BackgroundRaising a child with disabilities comes with many blessings and many challenges. At times, families can provide the support a child needs to thrive and develop to his or her potential. Not every family, however, looks the same or has the same level of natural supports and financial resources available to them. In many cases families caring for children with disabilities need some level of assistance to keep their children at home and prevent institutionalization. The supports and services a family needs for their child varies by child and by family. Some families only need respite–an opportunity to take a break, to rejuvenate from the sometimes exhausting 24/7 responsibilities. Other children need more extensive supports such as nursing, specialized therapies, attendant care, home modifications, durable medical equipment, developmental training and medical supplies. Families are not looking for a handout. They didn’t ask to join this club, but they willingly devote their physical and emotional energy, along with their financial resources, to ensuring their child thrives. At times, however, doing this alone is not possible. Families caring for children with disabilities want their children to remain at home. They often struggle for years trying to handle the physical and psychological stress. They often deplete resources in order to get their child medical services, therapies, and other professional care they need. When family supports are not available, families can be faced with an agonizing choice–either no services or placement in an institution. The fundamental flaw in the system of long-term supports and services for children in Texas is that institutional services are provided on demand (known as entitlement), yet community-based, family support services are provided on an “as available” basis. In recent years, “as available” often means not available. For families who can no longer do it alone, institutionalization may be their only option. This harms children, damages families, and has detrimental effects for their communities and the state. When limited resources are available, the types of services provided (the supply) should be based on the supports and services needed and desired by the individual using the service (the demand). Unfortunately, this is not the basis of service provision in Texas. In Texas, the provider of the service determines the supply, as the provider “owns” the bed. When the provider “owns the beds,” “owns the funding,” and owns the control over peoples’ lives, self-determination and person or family-centered decision-making is not possible and the state spends enormous resources on unwanted and unneeded services. Children with disabilities suffer developmentally when placed in long-term care institutions. Families suffer emotionally when children are separated from their parents and siblings. The state suffers financially when children with disabilities are placed in long-term care institutions, as the costs are typically higher. And, communities suffer because valued children are displaced and communities lose opportunities to develop and expand their capacity to support children. While institutionalization of people with disabilities was seen historically as an acceptable practice, research has shown that placing children in large congregate facilities is damaging to all areas of a child’s development. Additionally, institutional services are not the services that families desire. This is evidenced by the fact that there are thousands of children on the waiting list for community-based services (see table on page 5). The CouncilThe Children’s Policy Council works to assist the state in developing systems that support families to care for their children with disabilities, allows children to grow up in families, and uses State resources effectively. The Children’s Policy Council, statutorily authorized by H.B. 1478, 77th Texas Legislature, Regular Session, 2001 is charged with assisting the Health and Human Services Commission in developing, implementing, and monitoring long term care programs and services for children with disabilities. The driving motivator for Council members is the unmet needs of the thousands of children and families. By focusing on the Council’s mission, we continue to work for system change that will improve both the quality of services provided and access to services by children and families who so desperately need them.
By developing this biennial report, the Council hopes to provide information to policy makers, which will ensure that the needs of children with disabilities and the families caring for them receive priority attention. This report contains twenty recommendations that address the Council’s priority areas. Of these recommendations, eight require legislative action. The remaining twelve are policies that can be addressed by state agencies or HHSC. H.B. 2292, 78th Texas Legislature, Regular Session, 2003The Council recognizes that vast resources are being invested in the re-structuring of the health and human services system and sees the changing environment as an opportunity to focus on the needs of children with disabilities and their families by designing systems of support that will optimize opportunities for children. Several of the recommendations in this report involve ensuring appropriate expertise, including the creation of a Children’s Policy Center and the appointment of designated staff to address children’s long term services issues and initiatives. In restructuring the health and human services systems, the culture of the agencies should evolve to one that recognizes the ethical and financial value of adequate family supports as well as the need to move from an institutional-based system to a family-driven/person-driven system. The Council is eager to assist the Commission in this endeavor. Progress Made In Supporting Children and FamiliesHealth and human services agencies have coordinated in unprecedented ways, and have made significant strides in recent years in addressing the needs of children with disabilities and their families. Agency initiative, executive leadership and legislation have all contributed to help provide focus and guidance in this effort. Some of the major highlights include:
The Children’s Policy Council appreciates the efforts and initiatives put forth on behalf of children and families. The Council looks forward to a continued open and cooperative process in working with agencies and state leadership in addressing the significant issues that lie ahead. With legislative support and HHSC direction, the agencies made significant progress on the advancement of permanency planning and family-based alternatives, as was recommended in the 2002 Council report. Current Status of Long-Term Services for Children with Disabilities in TexasChanges made to various long term care programs during the 78th Legislative Session has had a significant impact on children in general, and children with disabilities specifically. Families raising children with disabilities need various levels of supports and services to care for their children. In some cases, intense levels of supports are needed. In many more cases, however, families need only minimal services to keep their families healthy and intact. These include services such as those offered by the In-Home and Family Supports Programs, Medicaid waiver programs, the CSHCN Program, the Children’s Health Insurance Program (CHIP), Early Childhood Intervention, Texas Integrated Funding Initiative, Child Protective Services, and flexible services offered through local MHMR centers. Reductions in funding or policy changes in any of these programs can make access to services difficult. The total elimination of one In-Home and Family Support Program and the drastic reductions in the other two In-Home and Family Support Programs were particularly harmful to children and families. These are low-cost programs that provide the most flexibility in service delivery. They are often the lifelines that keep children in families and prevent institutionalization. The changes to the CHIP program also have had significant detrimental effects on many children, including children with disabilities. Changes in eligibility criteria made many children ineligible to receive health care/medical services. Changes in benefits and cost containment measures also reduced services that are important to children with disabilities including dental services and mental health residential services. Families caring for children with disabilities and special health care needs often find it difficult to access private insurance. If they are able to access the insurance, the costs can be astronomical due to the child’s disabilities. The Children’s Health Insurance Program provided essential medical services to many children with special health care needs–medical services that often prevent more serious, and more costly hospitalizations. Children with disabilities or special health care needs typically comprise between 6 to 8% of the CHIP population. Many of the children who have lost coverage due to the policy changes will not be able to obtain other coverage and will remain uninsured or underinsured. This puts their well-being at risk, and significantly increases the likelihood that local hospitals and other providers will have to assume the cost of their care. Community Mental Health and Mental Retardation Centers also experienced significant budget reductions and programmatic changes that reduced their ability to provide services to children and families. Flexible funds that often provided services such as emergency respite were targeted. Additionally, program changes that removed case coordination activities from the local centers severely reduced the staff available to assist families in obtaining needed services and supports. Details on the changes from the 78th Texas Legislature that affect children with disabilities are described in the table below.
As a result of the lack of community-based family support services, children with disabilities continue to be institutionalized in Texas. Without access to an adequate level of support services, families often have no other choice but to consider out of home placement in institutional settings. Texas continues to lead the nation in the number of children with disabilities institutionalized in nursing facilities, intermediate care facilities for the mentally retarded, group homes, and institutions for the mentally retarded licensed by the Department of Family and Protective Services (DFPS). Children with Disabilities Residing in Congregate Facilities
While programs throughout the health and human services enterprise have experienced reductions, thousands of families continue to wait for community-based, Medicaid waiver services. No additional waiver slots were appropriated during the 78th Legislative Session. In fact, several programs experienced reductions in total number of waiver slots appropriated. The wait for services continues to be up to ten to twelve years depending on the program. Children with Disabilities on Program Waiting Lists
Continuing Barriers to Effective Family Support Services for Children with DisabilitiesIssues that create barriers to supports for children with disabilities and their families were identified around three key areas:
Access, in order to benefit a child, must be to the right type and amount of service at the appropriate time and in the most integrated setting. In addition, the needs of the child with a disability have an affect on the whole family. Family supports benefit the natural support system of the child with disabilities, and therefore, the child with disabilities has a better chance to stay in a loving nurturing family and develop to his or her maximum potential. In Texas, indicators that access is a problem are evidenced by our over reliance on facility based services for children. Texas has more children in institutions than any other state. Historically, services in institutions have been viewed as entitlements and the community-based services have not. Recent case law and policy directions suggesting a right to community-based services should compel Texas to consider new interpretations of its practice of institutionalization. Contrary to logic, the individuals who benefit financially from a child remaining in an institution are most often those with the responsibility for identifying opportunities for the child to live in a family and informing families of these service options. Lack of coordination and expertise on children’s issues continues to exist. Families report that finding programs for which their child is eligible is difficult and when they learn of a service, they encounter long waiting lists that move very slowly. Until recent years, the various health and human service agencies and programs were not well known or coordinated both among staff within the complex and diverse agencies or the public in general. Rather than a system, families had to deal with a fragmented maze of eligibility requirements and programs scattered here and there, with no one knowledgeable or responsible for consistent policy or program direction over the whole system. The reorganization of the service systems within the health and human services umbrella has, at a minimum, forced the system to understand itself better. Reorganization creates a new opportunity for children services and yet, with children served in each of the 5 new agencies, cross agency policy direction, children’s expertise and help for families navigating the system is needed now more than ever. Transition from children’s services into appropriate services for adults has long been a barrier to children with disabilities and a topic of much debate. Difficult negotiations by sometimes-reluctant agencies, some outside of the health and human services structure and authority, were conducted over many months. Finally, in 2002, a fairly comprehensive transition Memorandum of Understanding (MOU) was developed, but, due to changes in Texas statutes in 2003, was not implemented. Lack of adequately organized and coordinated transition of children into adult services is evidenced by children leaving the education system with no services in place or with services reduced on the individual’s 21st birthday, putting the young adult at risk of isolation and segregation. Efforts to address age limits in some programs have resulted in an automatic bridge into one of the adult programs, but not necessarily the program most appropriate to each individual’s needs. More must be done. Lack of flexibility, lack of funding, and lack of a system which embraces independent service coordination (case management), diminishes access, coordination, and transition can cause harm to children. In keeping with state policy that promotes children living in families and given the difficult economic climate, Texas cannot afford to use the precious resources that are available in ways contradictory to the most effective and desirable services. We are grateful to have an opportunity through these recommendations to take a further look at what changes can be made to envision and move to a more rational and cost effective system of services and supports for children with disabilities and their families. <<back to top>> The recommendations in this report were developed through a thoughtful, strategic process aimed at producing only recommendations that were considered by the Council to be reasonable and doable within our current economic climate. Much time and energy was devoted to eliminating recommendations that were deemed unreasonable, too costly, too broad, or not likely to occur in the current environment. As a result, this report contains valuable information that should be given serious consideration by legislative policymakers and agency staff. The recommendations in this report were developed by three subcommittees assigned to analyze specific issue areas including: 1) access to services, 2) agency coordination and collaboration of children’s services, and 3) transition services for youth. The recommendations in this report address many facets of the human services system that affect children with disabilities. Some recommendations address the need to continue current programs; others address the need to use existing dollars in ways that provide more optimal outcomes. Some of the recommendations in this report ask the Commission to address children’s issues in a more direct comprehensive manner and some recommendations request rule changes that would allow for more effective service provision to children. These recommendations are consistent with the national health and human services goals and objectives and reflect the values and principles of the federal initiatives supported by Texas agencies including, but not limited to: Healthy People 2010 (the national plan for healthcare), the National Title V Child Health Children with Special Health Care Needs goals, the New Freedom Initiative, the Real Choice Initiatives, De-institutionalization initiatives, and Promoting Independence.[1] Following is a list of the top 20 priority recommendations adopted by the Council, with a detailed explanation of each recommendation in the Individual Recommendations section. The recommendations are sorted into those requiring legislation and those that can be achieved through agency action. The fiscal impact statements were added this year. They represent a consensus opinion of Council members, but as of September 1, 2004 have not yet been submitted to the agencies for validation. All of the recommendations in this report represent the best use of limited resources to accomplish the most effective outcomes that maximize benefits to children and families and thereby deserve serious consideration. Recommendations Requiring Legislative Action
Recommendations to Address in State Agency Policies
<<back to top>> Over the past two years, the state has focused on the reorganization and the re-structuring of the health and human services system. Now that a new structure is in place, the focus should shift to creating a new health and human services organizational culture that focuses on person-centered and family-centered services that lead to opportunities for individuals to lead self-determined lives. The health and human services system should now shift the focus to designing a service delivery system that provides services and supports that meets the individuals needs. One thing is unquestionable: the vast majority of individuals with disabilities and families caring for children with disabilities want assistance that will help maintain life in families and in communities. Evidence-based best practices and national data on de-institutionalization provide proof of the need to re-design the provision of services in ways that eliminate the institutional bias. Families caring for children with disabilities do not want to ever be put in a position where the only option for their child is institutionalization. This is not choice. Waiting five to ten years on a Medicaid waiver waiting list is also not choice. Authentic choice rarely exists in the Texas health and human services system. Policymakers must reframe the discussion and redesign the delivery system to eliminate the institutional bias. When limited resources are available, the types of services provided (the supply) should be based on the supports and services needed and desired by the individual using the service (the demand). Unfortunately, this is not the basis of service provision in Texas. In Texas, the provider of the service determines the supply, as the provider “owns” the bed. When the provider “owns the beds,” “owns the funding,” and owns the control over peoples’ lives, self-determination and person- or family-centered decision-making is not possible and the state spends enormous resources on unwanted and unneeded services. The recommendations in this report offer ways to begin reframing the system so that “choice” becomes a word that truly means “real” choice. The state is in a prime position and at an optimal point in time to seriously create a new direction for long-term services and supports for children. We respectfully urge our state leaders and the Health and Human Services Commission to approach this period of optimization by implementing the Children’s Policy Council recommendations.
<<back to top>> Children’s Policy Council Recommendation # 1
BackgroundAbundant research shows that children are physically and emotionally healthier when they grow up in families and they have poorer outcomes in institutions. Birth families have historically had few alternatives to institutional placement when they are unable to care for their children with disabilities on their own. System funding and infrastructure have been historically weighted toward institutional services and little energy has been devoted to recruitment, development, and funding of alternate families. Experiences in Texas and other states have shown that a large majority of children with disabilities in institutional placement do not return to their birth families. Approximately 1,500 children and young adults (ages 0-22) with developmental disabilities reside in long-term care facilities in Texas, half of which are under the age of 18. The creation of a system of family-based alternatives to institutionalization requires increasing the state’s capacity by recruiting families to care for institutionalized children when birth families are unable or unwilling to resume their care. The purpose of the family-based alternatives project is to create family options for children currently residing in institutions. In so doing, they expand the capacity of the existing public and private providers to create and utilize new family-based options. The project is designed based on research, experience, and evaluation of leading practices around the country, which have shown that birth families prefer alternate family care over institutional placement when well-trained support families are available and carefully prepared and matched. The family-based alternatives project is distinguished from traditional foster care under the child welfare system by several unique features, including: recruitment is specifically targeted to children with disabilities; recruitment emphasizes a long-term commitment rather than short-term care; use of alternate families is a voluntary choice of birth families; use of alternate families affords a shared parenting arrangement of part-time care where recruited families and birth families can share caregiving; and enhanced child-specific training, preparation, careful matching, and transition planning increase the likelihood of long-term care. Anticipated Fiscal ImplicationsModest short-term costs, matched by federal dollars, may be needed to establish a statewide system of family-based alternatives to institutional placement. Long-term savings are expected with decreased institutional costs. Enhanced developmental progress of children will lead to fewer long-term service costs for state. ConclusionChildren belong in families. By devoting energy to recruiting and developing alternate families when return to the birth or natural family is not possible, the state increases capacity with viable, cost-effective options to institutionalization for children with disabilities. Children’s Policy Council Recommendation # 2
BackgroundFor over two decades, Texas has opted to take advantage of Medicaid funding through home and community-based Medicaid waiver programs. Multiple waiver application made by Texas to address a specific population or to address a re-financing goal has been approved by the Centers for Medicaid and Medicare Services (CMS). Texas has seven waivers currently available, each with a somewhat different service array. As Texas learns how best to serve children in families, waivers must be amended to ensure that any child in any waiver has access to services and supports needed by that child and his family. Currently, not all services are available in all waivers. For example, a support family service is not available in all the waivers, although a child in any of the waiver programs may need this service. In an attempt to experiment with a comprehensive service array, the Consolidated Waiver Program was created. The Consolidated Waiver Program (CWP) has successfully demonstrated the feasibility of individuals having access to services using a broader and more comprehensive array of options, regardless of the disability of the eligible individual. Anticipated Fiscal ImplicationsNo fiscal impact. Each waiver is approved if it meets the “cost neutrality” requirements of the federal government. Each individual is required, as a condition of eligibility, to meet cost cap requirements. Neither of these requirements would change and the fiscal impact is not expected to increase costs for a waiver adding support family services. ConclusionA comprehensive array of services that is available in all Medicaid waivers ensures that children and families have access to the services they need. Children’s Policy Council Recommendation # 3
BackgroundChildren with disabilities and special health care needs in the Texas Department of Family and Protective Services–Children’s Protective Services (CPS) system have a lower rate of adoption than children without disabilities. This is, in part, due to the low adoption subsidy. Since September 2003 CPS has had a two-tiered system. There is a basic rate that can be up to $400/month and a higher rate that can be up to $545/month for children with more complex needs. While this has been an improvement, it still does not allow families to address some of the complex needs and conditions that children have, especially children with disabilities. Foster families, who may be interested in adopting a child placed in their home, find that there is a financial disincentive for them to adopt a child with more than basic needs, especially a child with disabilities who may have various complex needs. If they adopt the child, the adoption subsidy rate currently is far less than the foster care rates. As a result, if the families adopt they might not be able to provide the child with the level of supports and services as before. Federal law allows states to increase the adoption subsidy amount. Subsidies can be tiered in amounts up to the foster care maximum rates. CPS is proposing that the $545 maximum rate be increased to $700 for children with moderate needs, and that a higher maximum rate of $900 be set up for children with specialized and intense level needs. The Council supports an increase, but recommends that the rates be made equivalent to the child’s service level rates in foster care. The fiscal year 2004 foster family monthly rates are $600 for children with basic needs, $1050 for children with moderate needs, $1350 for children with specialized needs, and $2400 for children with intense needs. It is allowable and desirable to have a tiered adoption subsidy that mirrors the child’s foster care reimbursement rates so that the family can continue to provide the child’s current range of services and supports to address the various complex needs of the child. Anticipated Fiscal ImplicationsThe fiscal impact is unknown. Under one proposal there would be at least a moderate fiscal increase, particularly in the beginning as the subsidy options were made available to children currently in the system. The current method of finance used by CPS for adoption subsidy is different from that used for foster care and involves the use of more state funds. More research is needed to look at the finance options available within the health and human services system that might help support the proposed options for subsidy. If a child were adopted, there would no longer be funds needed to pay for the administrative overhead for Child-Placing Agencies (CPAs) or residential group care facilities. Other savings involve the CPS caseworkers’ time spent in visiting/contacting the child and the facility, conducting service planning, participating in court reviews, and maintaining the child’s case record and the court’s time in overseeing and reviewing the case. ConclusionMore children with disabilities in the CPS foster care system will be adopted and meet their developmental need for security and continuity if a mechanism is developed that will allow an adoption subsidy equivalent to the foster care rate that is necessary to provide adequate care. Children’s Policy Council Recommendation # 4
BackgroundEven if a family has health insurance, children with special health care needs and disabilities are more likely to be underserved by their insurance company. According to the Maternal and Child Health Policy Research Center “coverage for behavioral health and specialized services [are] usually subject to visit or monetary limits and usually condition or treatment exclusions as well.” “Children requiring ancillary therapy and behavioral health services, as well as those requiring home health care, were least likely to have service needs met.” The 78th Texas Legislature enacted Senate Bills 541 and 10 which allow insurers to sell policies that don't have many of the benefits mandated by state law. Among the mandates no longer required are:
S.B. 10 allows policies sold to employers through “purchasing cooperatives” to exclude:
This will result in more children developing chronic conditions or disabilities and significantly reduced quality of life for children with special health care needs and disabilities. The short-term benefits to Texas are lower uncompensated care at emergency rooms, less cost shifting to public programs, fewer medical complications, and fewer parents compromised at work due to child care complications and unnecessary stress. Longer-term benefits are more children placing fewer burdens on the health and human services system. More children will be better able to work and contribute to their communities and to Texas. Anticipated Fiscal ImplicationsNo fiscal impact. Many state and federal programs are providers of last resort. Mid- and long-term fiscal benefits to government are expected as a larger portion of the cost of care is supported by private insurance reimbursements. ConclusionRestoring the mandated benefits in health insurance policies for children will help ensure that our children remain healthy, get the health care they need, and have the opportunity to reach their potential. State and federal programs must be able to use all available resources to finance needed care and ensure that the government is the payer of last resort. Children’s Policy Council Recommendation # 5
BackgroundTexas has recognized that the best way to ensure the safety and wellbeing of children is to have them grow up in nurturing families. Rider 28, of House Bill 1, 78th Texas Legislature, Regular Session, 2003 provided a mechanism by which the funding for children and adults residing in nursing facilities could be used to provide services and supports that would allow them to live a more promising life in families and in communities. Unfortunately, Rider 28 is currently only available to individuals residing in nursing facilities–it does not apply, or is not available, to children residing in other long-term care facilities. Out of the approximately 1,500 Texas children with disabilities living in institutions, only 216 are living in nursing facilities. Most other children who live in institutions do not have access to a mechanism that would allow the resources spent on institutional services to be used to provide community-based services. As a result, these children are denied the opportunity to grow up in families because of the type of disability they have and the type of institution in which they reside and continue to incur expensive institutional costs when equal or lesser expenditures could better meet their needs in the community. Implementing Rider 28 in the Intermediate Care Facility for persons with Mental Retardation (ICFMR) system would have different implications from implementation in the nursing home system due to the difference in the occupancy rates of the facilities. In the current ICFMR system, the provider owns the “package” of service and the individual receives a package of bundled services as opposed to using what they need and want. To eliminate the fiscal implications, the system should be re-framed so that the services belong to the individual and not to the provider of services. Anticipated Fiscal ImplicationsNo fiscal impact to the state. The money used to pay for community-based services cannot cost more, in the aggregate, than institutional services due to federal cost neutrality requirements. ConclusionExpanding Rider 28 “money follows the person” to children with disabilities who reside in any type of long-term care institution would provide the opportunity for many children to grow up in families. Children’s Policy Council Recommendation # 6
BackgroundPermanency planning laws in Texas are designed to ensure that children who are placed in institutions are placed there on a temporary basis. The objective of the permanency planning process is to ensure that the child will live in a long-term nurturing relationship with a family as soon as possible. Texas must ensure that parents are informed about the developmental risks of institutionalization and have an opportunity to explore the benefits of family-based alternatives to placing their child in an institutional facility. With the passing of S.B. 368 in the 77th Texas Legislative Session, the Health and Human Services Commission (HHSC) was charged with monitoring child placements and ensuring ongoing permanency plans for each child with a developmental disability residing in an institution in the state of Texas. Permanency planning has been improved by the collaborative efforts between HHSC and the Texas Department of Human Services (TDHS), the Texas Department of Family and Protective Services (DFPS), and the Texas Department of Mental Health and Mental Retardation (TDMHMR). For children living in nursing homes and those in facilities under the conservatorship of DFPS, the parties responsible for permanency planning are not affiliated with the institutional provider and thus do not have an interest in maintaining the child’s current placement. The avoidance of conflict of interest among parties facilitating permanency planning for approximately 1,180 children living in institutions overseen by TDMHMR is not always clear. These institutional settings include Medicaid Waiver group homes and Intermediate Care Facilities for Persons with Mental Retardation (ICFs/MR). Although local mental retardation staff persons facilitate the initial permanency plan, the institutional provider is responsible for the ongoing permanency planning thereafter. It is contrary to a provider’s financial interest to continually seek resources and opportunities for a child to leave the institution to live permanently with a family as soon as possible. As a result, HHSC cannot be assured that families are afforded an opportunity to make an informed decision about their child’s placement when the person’s responsible for facilitating the process and providing accurate information may have inadequate knowledge about alternatives and/or a bias towards maintaining the child’s current placement. Anticipated Fiscal ImplicationsModerate fiscal impact. Part of the cost of providing ongoing permanency planning by a disinterested party can be recovered from the institutional providers who are currently being reimbursed for this activity as part of their daily rate. ConclusionAll permanency planning should be carried out by an entity, such as a local mental retardation authority, unaffiliated with the institution in which the child resides and knowledgeable about community resources to ensure that our children spend as little time in institutional settings as possible. Children’s Policy Council Recommendation # 7
BackgroundStudents with disabilities lag behind students without disabilities in the areas of graduation rates, employment, post-secondary education and independent living activities in their communities. Students with disabilities also have higher drop out rates than peers without disabilities. In 1990, the Individuals with Disabilities Education Act (IDEA) required transition services to be provided to students who are 16 years of age or older, or younger, if deemed appropriate. This legislation provided students with an enormous opportunity to be involved in planning their own education, to look into the future, to voice preferences, concerns and desires, to be heard, and to share in making decisions that so directly affect them. In 1997, IDEA was reauthorized and expanded to ensure that public schools begin transition planning at age 14. IDEA defined transition as a coordinated set of activities that is designed to help a student move from school to post-school activities, including post-secondary education, vocational training, integrated employment (including supported employment), adult services, independent living, and community participation. There are many agencies that provide the services that a student transitioning from public school might need in order to succeed in adult life. However, negotiating the maze of service agencies has proven to be difficult and often results in students leaving the public school system to sit at home, isolated from society because they were not connected with the assistance they needed. In 1995 and again in 1999, the Texas Legislature addressed this requirement to coordinate services between and among agencies that provide services to students when they leave public school, by requiring the development and implementation of an MOU that was intended to address the respective roles and responsibilities of the participating agencies. The MOU was to address the sharing of information about and coordination of services to eligible students with disabilities receiving transition services. The MOU was developed and signed by 13 participating state agencies and became effective on January 1, 2003. Shortly after the MOU was completed and signed by all participating agencies and a curriculum was well underway to facilitate implementation of the MOU, it was repealed by H.B. 2823, 78th Texas Legislature, Regular Session, 2003. As a result, participating agencies no longer have a mandate to coordinate transition activities at the level that was deemed necessary for students to lead successful lives as adults. The previously developed and adopted MOU outlined specific coordination activities that are consistent with the Legislature’s mandate to optimize services across state agencies. Responsibilities of agencies to perform transition activities were reduced, as was accountability for coordination among agencies, with the repeal of the MOU. Therefore, the Council recommends that a new Transition MOU be developed using the recently repealed MOU as a model. HHSC and TEA should share responsibility for the development of the MOU. Anticipated Fiscal ImplicationsNo fiscal impact. Additionally, coordinated services are more cost effective for the state by reducing costly duplicative efforts by multiple agencies. ConclusionIt is critical that delivery of transition services is a coordinated set of activities, focused on individual outcomes, that includes all appropriate adult service agencies and stakeholders. Better coordinated transition service delivery systems result in increased opportunities for students to achieve their post-secondary goals for adult life benefiting the individual, his or her family, the community and the state. Children’s Policy Council Recommendation # 8
BackgroundSupporting families to care for their children with disabilities at home enables a child to avoid institutionalization, which often saves the state significant resources. With moderate assistance, many families are able to provide the support and service their child with disabilities needs. Supporting a child to remain with his or her family keeps families intact, gives children the opportunity to meet their potential, and often costs less than long-term institutional care. Reducing child and family support services is contrary to sound economic policy in that costs to the state will likely be much higher if the child is institutionalized and the state becomes responsible for 24-hour care. Likewise, reducing access to needed healthcare services puts children with disabilities at risk of further complications and costly hospital care. During the 78th Legislative Session, several programs that support families in caring for their children with disabilities were significantly reduced. Additionally, total appropriated Medicaid waiver program slots were reduced. This lack of access to services puts families at risk and some in crisis. The effects of these changes are becoming evident.
No additional waiver slots were appropriate and several of the programs were “frozen” meaning that even attrition slots could not be utilized. Anticipated Fiscal ImplicationsSignificant short-term fiscal investment for long-term benefits to the state and to local and county governments. Addressing these concerns would provide fiscal relief to local and county entities to which costs have been shifted. When analyzing cost neutrality, fiscal implications should take into consideration total cost to the state and not be based solely on individual program costs. ConclusionAs the charts in this report indicate (see page 5), tens of thousands of individuals are waiting for Medicaid community-based waiver services. This evidences the need to increase, not decrease funding and capacity for community programs. The 10-12 year wait for waiver services must be addressed. Community services must be made a priority. Children’s Policy Council Recommendation # 9
BackgroundSeventy-one percent of Americans are covered by private insurance, yet private insurers pay only 36 percent of total national health care expenditures. Sixty-three percent of Texans are covered by private health insurance. When an insurance company denies payment or authorization of a covered benefit, needed services are sometimes postponed, thereby exacerbating the child’s health problem. Typically, the child receives the services and the parents are left with the bill. More often than not, this can go on for only so long before the cost falls back on the public sector. This is a problem for the employers who pay premiums for services not provided, and for the public sector, which as payer of last resort utilizes public resources in covering services that are the legal responsibility of the private insurance carrier. This is not meant to disparage all private insurance carriers. Many insurers fulfill their legal obligation under the terms of their insurance contract. However, insurance companies have teams of experts, parents and do not. Private insurance tends to cover healthy individuals, often excluding treatment of pre-existing conditions for 12 to 24 months or longer, and charge higher premiums for the sickest and most expensive patients. Most insurance does nonetheless offer benefits that include coverage of a variety of services for children with disabilities. Parents, however, often have a difficult time in accessing the full range of those benefits. Covered benefits may be denied for a variety reasons. Parents often do not have the resources, knowledge or technical expertise needed to successfully appeal denials or otherwise pursue proper coverage for insured benefits. Denial of some benefits, such as home nursing care, can lead to a child being placed in an institution, resulting in compromised developmental outcomes for the child, severe emotional angst for the family, and a lifetime of unnecessary taxpayer expenditures for the institutional care. The state of Michigan Department of Mental Retardation Services hired a part-time attorney to provide parents with technical assistance in appealing denied claims. This has resulted in over $100 million in previously denied private insurance claims over a ten-year period. Much of the $100 million was for services for which the state would have eventually born the burden. Anticipated Fiscal ImplicationsMinimal short-term investment. Many state and federal programs are providers of last resort. Mid- and long-term fiscal benefits to government are expected as a larger portion of the cost of care is supported by private insurance reimbursements. Expected to save the state millions of dollars annually in otherwise cost shifted expenditures. ConclusionPrivate insurance companies must be held responsible for covered benefits. Employers should get what they pay for and taxpayers should not subsidize insurers who neglect to pay for legally mandated coverage. The State of Texas can use the savings to better serve taxpayers and the children of this state. Children’s Policy Council Recommendation # 10
BackgroundExperience has shown, that for some children residing in long term care institutions, parents and/or other legally authorized representatives cannot be located when healthcare or permanency planning decisions need to be made. This places the well being of the child at risk. Children with disabilities deserve the opportunity to receive appropriate and timely medical care. They also deserve the right to have the option to grow up in a nurturing family. In the current system, these are decisions that are typically made by the parents who retain custody of the child when they are placed in a long-term care institution. In an emergency, when parents cannot be found, the facility staff persons may be forced to make medical decisions. Institutions do not, however, have the authority (nor should they) to make decisions about how to ensure a child’s future opportunity to live in a family. State statutes require permanency planning for institutionalized children every six months. When the parents cannot be located and do not participate, the requirement is perfunctory and not meaningful. When parents of institutionalized children cannot be found, children are left in limbo. To give these children an opportunity for appropriate medical care and comprehensive permanency planning, a system should be developed to: 1) identify institutionalized children who’s parents/guardians have not been in contact with the facility for the past six months, 2) perform a due diligence search to ensure that parents willing to participate in the child’s life are given the opportunity to do so, and 3) develop an alternate mechanism for decision-making on the child’s behalf in the event the parents/guardians cannot be found or are not willing to participate. Alternative decision-making options should be developed utilizing various stakeholders including, Child Protective Services, Department on Aging and Disability Services, the Health and Human Services Commission, children’s advocacy organizations, disability organizations, the family court system, and institutional facility staff. The process should include “front door” notification requirements that inform parents of their responsibilities when they place their child in an institution and the consequences of not meeting those responsibilities. Anticipated Fiscal ImplicationsNo fiscal impact. The number of children needing the service will be extremely small. As “front door” processes are implemented, it is anticipated that fewer children will be abandoned and less alternative decision-making will be needed. ConclusionIt is hard to understand and explain how parents/guardians of institutionalized children can simply “fall off the face of the earth” and disappear from their child’s life. Fortunately, this is not the norm. For those few who do, however, the effects on the child’s life are devastating. Children must not be destined to a life of inadequate decision-making authority for medical care, or a lifetime of institutionalization due to parental absence. Facilities need access to an individual who has authority for the child and the child’s best interests. A system of alternative decision-making must be established to ensure that the rights of these children are protected. Children’s Policy Council Recommendation # 11
BackgroundChildren with disabilities are admitted by the state to residential treatment centers, therapeutic camps, and long-term care institutions such as Intermediate Care Facilities for persons with Mental Retardation, nursing facilities, and Institutions for the Mentally Retarded licensed by the Department of Family and Protective Services (DFPS) without regard to facility’s quality of care rating. Although the state does not place a child in a childcare program with a low rating, they do allow a child to live in a residential setting with a low rating. The Department of Aging and Disability Services has quality of care scores available to the agencies and the public on their Quality Reporting System (QRS) website. Scores are based on the most recent regulatory surveys (reviews) and are listed on the website, along with the nature of deficiencies at the facility. A minimum standard should be developed and put in place before considering placement of a child in CPS conservatorship in a therapeutic facility or residential placement. The information is available but the state is not using it to protect children. For example, DFPS currently may place a child in an ICFMR facility without a requirement to check the rating and without a prohibition against placement of a child in a facility with a low quality standard as reported by the Department of Human Services. Anticipated Fiscal ImplicationsNo fiscal impact. There is no charge to check the data for nursing facilities and ICFs/MR and the data is currently available to the agency staff and public. DHS inspects and regulates these facilities. The department conducts routine survey inspections of licensed facilities, and it also conducts complaint investigations in these facilities. In addition, DFPS regulates other facilities and could make the information available to the public. ConclusionEstablishing a standard below which individuals may not be placed by state officials is a necessary protection for children with disabilties. While the state works to ensure that children have the opportunity to grow up in successful families, over 1,500 persons under 22 years of age currently reside in long term care facilities. Both families and the state pursue admission of children into facilites. The state, in its role as conservator or guardian, must commit to work toward family options for all children. When temporary placement is necessary children should be placed only in facilities which meet minimum standards. Children’s Policy Council Recommendation # 12
BackgroundSelf-determination is a concept that includes the belief that people should be responsible for major decisions about their own life. People who do not depend on formal services and supports in their daily lives are free to make choices based on their personal goals and values. Self-determination is about giving that same freedom to people who depend upon services and supports provided by others. For children, self-determination is a developmental process of learning the skills necessary for them to have control over where they live, what they do for a living, what they do for fun, how their money is spent, and how active they choose to be in their communities. Families play an important role in helping children develop self-determination skills. For an individual using formal services and/or supports, self-determination shifts control of services and supports from professionals to the individual and/or family. Currently Texas does not enable the practice of self-determination in any programs or policies. While Texas does practice person-directed planning and consumer-directed services in a limited number of its programs, these are only steps toward self-determination. Consumer-directed services allows the individual to be the employer of record and a fiscal intermediary to take care of all the labor and IRS administrative functions. In Texas, only two services are consumer-directed at this time: personal attendant services and respite. Continue a focus on self-determination through the Consumer Directed Services Task Force and all agency centers for policy and innovation, in collaboration with stakeholders involved in defining and moving toward self-determination in policies and program design. Each agency, including HHSC, should ensure that appropriate staff participate in collaborative efforts and develop rules and initiatives with policy representatives involved. Anticipated Fiscal ImplicationsNo fiscal impact. Implementation of self-determination principles requires a different approach to the budget process. Supporting personal freedom through self-directed supports and individually managed budgets is possible when self-determination guides service provision. ConclusionAdopting policies and modifying programs based on the principles of self-determination will expand opportunities of young children regardless of the setting in which the children reside. Greater independence and personal satisfaction are evidenced when control over one’s own services and supports and the resources that finance them yield more purposeful, self-determined lives based on individual dreams and aspirations. Children’s Policy Council Recommendation # 13
BackgroundChildren are served by all five health and human service agencies. Some programs are specific to children; others include children within a larger population. Over forty health and human service programs serve children under age six, representing over $4 billion in expenditures. To the greatest degree possible these programs and services should be coordinated. A children’s policy center will help provide direction and guidance in strategic operations and planning relating to children’s programs, policies and initiatives. More specifically, the Center can: help establish goals and objectives in supporting overall health and human service strategic planning; develop issue or position papers; review federal and state regulations that impact children’s services and programs; and develop and evaluate budget requests. The Center can also help provide direction and guidance to each agency and its staff; coordinate selected HHSC or cross agency initiatives for children; collaborate with non health and human services agencies such as the Texas Education Agency, Texas Workforce Commission, Texas Department of Housing and Community Affairs, Texas Youth Commission, and others; inform senior policy analysts and executive staff; research and implement new initiatives; and provide consultation, analysis, and feedback on the impact of policy decisions on children and family services. Since this recommendation was first proposed and adopted by the CPC, HHSC has created such a “center.” The “Office of Program Coordination for Children and Youth” has been created to assist executive staff and senior policy analysts in coordinating children’s policies across HHSC agencies. The Office also oversees the operations of various children’s programs and initiatives, including children’s long-term care, family-based alternatives, permanency planning, the Office of Early Childhood Coordination, the Texas Integrated Funding Initiative, and the Community Resource Coordination Groups. The CPC commends HHSC in establishing this office and recommends that HHSC work with the other health and human service agencies to establish a similar structure, or mechanism to help ensure that children’s programs and services are kept in the forefront of policymaking at each agency, and that adequate staff resources and children’s expertise are focused on children across the health and human services system. Anticipated Fiscal ImplicationsNo fiscal impact. ConclusionWe commend HHSC on initiating the Office of Program Coordination for Children and Youth. It is imperative that the Office be granted sufficient responsibility and authority to facilitate coordination and advancement of policies and programs affecting Texas children and youth. The Children’s Policy Council looks forward to working with the Office to advance the cause of children with disabilities and special health care needs. Children’s Policy Council Recommendation # 14
BackgroundSome of the legacy health and human service agencies have historically employed staff with expertise on children in critical areas of policy development and service implementation. These designated staff persons were responsible for continually researching up-to-date information about effective and innovative approaches to the provision and enhancement of services to children with disabilities. They also focused on strategic planning and funding decisions that resulted in the most successful and cost effective array of services and supports for children and their families. The importance of this expertise is evidenced by the unique needs of children with disabilities and the families that care for them. Policies, procedures, and program guidelines developed for adults do not always apply to children and do not always provide the supports and services needed by children and families. With the reorganization of the health and human services agencies, some children’s advocates have voiced concern that the reorganization will result in a loss of expertise on children in areas of policy development and program implementation. Legacy agencies and re-organization workgroups are making decisions about where staff positions or functions will be mapped into the new agencies. There have been no assurances that staff with expertise in developing policy or providing services to children will be mapped into these critical areas. Moreover, current staff in the legacy agencies that are well aware of impending reductions in staff and budgets are vacating key positions. This risk becomes more urgent as transformation continues. The newly formed agencies must be able to develop policies and practices that protect the rights of children and their families to have access to health and human services that promotes the health and development of children. The Council believes that without a continuing commitment to children, there is a risk that the quality and quantity of services for children will be diminished. Anticipated Fiscal ImplicationsNo fiscal impact. There should not be the need for additional funding for these positions if the legacy agencies ensure that staff with the appropriate expertise on children are mapped into either the Center for Policy and Innovation or the Center for Program Coordination or that positions currently vacant are filled by personnel with expertise on children and mapped into one of the Centers mentioned above. ConclusionIt is imperative that each health and human service agency employs staff with expertise on children in key areas of policy development and service implementation–either the Center for Policy and Innovation or the Center for Program Coordination and in policy positions in the Provider Services areas. The reorganization of the health and human service agencies offers an opportunity to hire or map the appropriate staff with specific expertise on children into these key areas. Children’s Policy Council Recommendation # 15
BackgroundThe best way for the state of Texas to ensure that services are effective is to engage individuals receiving services and their families in the designing, monitoring and evaluation of services. Families express a desire for services that lead to independence, self-determination, and purposeful, fulfilling lives. In Texas, we envision partnering not only with the individuals who receive services, but those who apply but are waiting, and those who may require supports in the future. Our primary policy goal is for families to partner in decision making at all levels so that children with disabilities and special health care needs have access to services and supports they need when they need them. The Health and Human Services Commission and the legislature have confirmed and endorsed the need to hear from families of children with disabilities, youth with disabilities and other stakeholders when it comes to effective services. However, few agencies include family members and youth in appropoiate positions and units within the agencies. Additionally, other important voices, such as the Children with Special Health Care Needs Advisory Committee, the Children’s Community Resource and Coordination Group advisory committee, and others have been lost or minimized in the reorganization process. The Children’s Policy Council has served as a vehicle through which families and advocacy organizations are heard. The opportunity to build and expand participation of family and individual partners helps to confirm, through the transformation and optimization phases of re-organization, that the efforts of the state are heading in the direction that will effectively and efficiently serve the individuals for which they were intended. The recommendation above is self-explanatory, simple and doable. In addition, the on-going commitment to continuous and meaningful dialogue and improvement based on feedback must occur throughout the state of Texas, and not just in Austin. Anticipated Fiscal ImplicationsNo fiscal impact. With proper planning, the cost of implementing these recommendations is minimal. ConclusionExpanding the quantity and quality of family and youth involvement as external and internal partners in designing, implementing, monitoring, and evaluating health and human services is a sound and inexpensive strategy to improve the system in the short and long-term. Children’s Policy Council Recommendation # 16
BackgroundFacilities licensed by DFPS are not allowed to let children share bedrooms with an adult or other age inappropriate roommate unless a variance has been obtained based on valid justification. Some residential institutions such as ICFs-MR and HCS group homes that are licensed or approved by agencies other than DFPS have allowed children to be placed with adults or other age inappropriate roommates. In these scenarios children with disabilities are vulnerable to abuse and inappropriate interactions, particularly during the night. Having a health and human service policy on this issue would ensure consistency across agencies and would lessen the opportunity for abuses to take place. This prohibition will also serve to address situations where a child is placed in a facility where all other residents are adults. The developmental needs of a child cannot be addressed adequately where services are geared to adults. There are exceptional situations where these concerns might not apply, such as when a youth in such a placement turns 18 and the other children in the room remain bonded to the 18 year old. Having a process to give exceptions when justified would address such situations. Anticipated Fiscal ImplicationsNo fiscal impact. ConclusionTo protect the safety
of children who reside in places such as the ICFs-MR and HCS group homes,
it is important that bedrooms not be shared by children and adults or
others whose age difference may put a child at risk of abuse.
Children’s Policy Council Recommendation # 17
BackgroundYoung adults with disabilities or special health care needs who age out of children’s services in health and human services agency programs need help in accessing information, networks, and support systems regarding resources and services available to adults. The service systems are complex, with changing rules and policies about eligibility criteria and what services are or are not covered. Without transition supports from health and human services agencies, these young adults may struggle on their own when trying to access services and are unlikely to get the supports and services they need. Transition planning and services are inconsistently offered to youth in the health and human services agencies before they age out of the children’s programs. Such youth and their families frequently don’t understand the importance of this information and initiating transition activities at an early age. Their needs become magnified as young adults when they are out on their own and no longer have access to the same case managers/resources/supports they had as children. When these young adults contact an health and human services agency for assistance in understanding what resources are available and in contacting appropriate resources/networks as needed, there needs to be a way for their inquiries to be routed to appropriate field staff and/or contractors who have sufficient expertise and training in transition issues and who can be available to offer at least some short-term assistance. As an example of this, Child Protective Services (CPS) at DFPS has Preparation for Adult Living (PAL) staff persons who are available to assist young adults who age out of the CPS system. These staff persons are able to assist aging out youth in accessing services that may be available to them under the Chafee Foster Care Independence Act. Similar services should be available to children and families when they transition from children’s long term supports and services into adult services. Anticipated Fiscal ImplicationsMinimal fiscal impact. HHSC, DARS, DSHS, and DADS of the health and human service agencies would need to dedicate some staff and/or some contract resource staff who could be available to assist with these issues when contacted. ConclusionHaving knowledgeable staff at each of the health and human services agencies will help ensure that young adults with disabilities transitioning out of health and human services agencies’ children services will have access to more meaningful support during transition into adult services. Children’s Policy Council Recommendation # 18
Background“It is the policy of the state to strive to ensure that the basic needs for safety, security, and stability are met for each child in Texas. A successful family is the most efficient and effective way to meet those needs. The state and local communities must work together to provide encouragement and support for well-functioning families and ensure that each child receives the benefits of being a part of a successful permanent family as soon as possible” (Government Code Section 531.152). This is the core of permanency planning. Legislation defines permanency planning as “a philosophy and planning process that focuses on the outcome of family support by facilitating a permanent living arrangement with the primary feature of an enduring and nurturing parental relationship” (Government Code Section 531.151). Also articulated in the legislation is a policy for Texas regarding children. Given this legislation, prior to placement in an institutional setting, families should have an opportunity to consider all options of care available for their children that might prevent the need for out of home placement. If temporary placement is necessary, families should be given assistance in determining the supports and services that would be required for their child to either return to the family home or live in an alternate family setting. This process was designed to ensure that families make an “informed decision” and understand that children who are placed in institutions are placed there on a temporary basis. Currently children can be placed in Intermediate Care Facilities for persons with Mental Retardation (ICFsMR) or nursing facilities prior to the family participating in the permanency planning process, which is designed to help the family consider all their options, including those that might prevent the need for placing their child in the facility. Allowing the family to place their child prior to participating in permanency planning activities is contrary to permanency planning legislation as it prevents the family from making an informed decision about the placement of the child. Once placed out of the home the vast majority of the children never live in a permanent family setting again. ICFsMR and nursing facilities should not be allowed to accept admission of a child whose family has not completed the permanency planning process. Anticipated Fiscal ImplicationsNo fiscal impact. As permanency planning is required for all children placed in an institution, ensuring that it is undertaken prior to placement will incur no additional costs and may prevent costs associated with unnecessary placements. ConclusionAdmission criteria must be revised to ensure that
they are consistent with the intent of permanency planning legislation.
This will ensure that every family seeking institutional placement for
their children has an opportunity to consider all options of care, including
those options that might prevent the placement in the first place.
Children’s Policy Council Recommendation # 19
BackgroundInclude within the health and humans services system a specific and sufficient plan that includes how to address shifting the system from its institutional bias to a system that focuses of a family as the most efficient and effective way to meet a child’s needs. Effective strategies and positive outcomes do not always become incorporated within overall health and human service policies, direction and provision of services. Good ideas too often become initiatives, adopted only by a single agency or single program within an agency. Sometimes, new best practices from other states get tested and, if the outcomes are positive, may get implemented within a program regionally and then statewide. What is missing, however, is a comprehensive strategic plan for children using lessons learned from innovative initiatives to move the system forward as a whole, across and within all the health and human service agencies and their child serving partners in agencies outside the health and human service system. A good plan would include consideration of initiatives including, but not limited to, Healthy People 2010 (the national plan for healthcare), Maternal and Child Health Children with Special Health Care Needs goals, the New Freedom Initiative, the Real Choice initiatives, de-institutionalization initiatives, and Promoting Independence. Such a plan would also ensure coordination with non- health and human service programs and agencies, including the Texas Education Agency, the Texas Workforce Commission, the Texas Youth Commission, the Texas Juvenile Probation Commission, the Texas Department of Transportation, the Texas Department of Housing and Community Affairs, and others as appropriate. Anticipated Fiscal ImplicationsNo fiscal impact. This can be done with existing staff and through existing advisory and stakeholder mechanisms such as the new state agencies’ Centers for Policy and Innovation, Children’s Policy Council, the Texas Integrated Funding Initiative Consortium and with purposeful solicitation of additional stakeholder input. ConclusionDeveloping a comprehensive strategic plan for children will benefit HHSC and health and human service agencies by providing a framework for setting goals for children within the system, benchmarking progress, evaluating outcomes, and improving, over time, the type and quality of services to children with disabilities and their families. Texas can continue to take advantage of federal initiatives such as Real Choice grants, with a focus on goals for children within the plan. The plan will benefit HHSC’s partners outside the HHS system so they can collaborate more effectively when goals are shared and children move between systems. Children’s Policy Council Recommendation # 20
BackgroundChildren who age out of the Medically Dependent Children's Program (MDCP) 1915 (c) waiver program and/or the Comprehensive Care Program under the State Medicaid Plan at age 21 have access to the Community Based Alternatives waiver, but not the CLASS or HCS waiver programs. Texas could allow children who are not able to successfully transition into the CBA program when aging out of MDCP or CCP due to the limited cost cap, to access the CLASS or HCS programs instead. Their Medicaid and state match dollars are potentially available to allow transition/refinance into the waiver most appropriate to his or her needs. With assistance from the Department of Aging and Disability Services (DADS) and/or their case manager, this population may be able to develop a plan of care which uses fewer nursing hours and more personal attendant hours and qualify for CBA. However, if the CBA cost cap is still too low, the access to the CLASS or HCS program with a higher cost cap could prevent institutionalization. CLASS or HCS expenditures may even be less than they were spending in the MDCP/CCP program combined. Creating this mechanism is cost effective in comparison to institutionalization which will occur if adequate services are not available. Children in MDCP or CCP would very likely qualify for CLASS and/or HCS. Because the CBA cost cap is lower and because these two groups of individuals, upon turning 21 years of age, can no longer access Private Duty Nursing through the Comprehensive Care Program, they are in the community and clearly at risk of institutionalization. They are likely already on the waiting list for CLASS, HCS, or both. They are already using combined state and federal dollars to access services in the most integrated setting according to the Americans with Disabilities Act (ADA), and need to maintain the ability to continue to do so. Anticipated Fiscal ImplicationsNo fiscal impact. A rule change to broadened access to the most appropriate waiver will still maintain the state’s commitment to the federal cost neutrality requirements and prevent more costly institutional services in a long term care facility over the course of each individual’s lifetime. ConclusionPermitting access to the most appropriate waiver will keep individuals in cost effective community care programs and is consistent with Executive Order RP 13. <<back to top>> House Bill 1478 ChargesThe Children’s Policy Council is charged with studying and making recommendations in the following areas:
<<back to top>> Children’s Policy CouncilSusan Murphree, Chair -- Colleen Horton, Vice-Chair Letter of Support for Texas Integrated Funding Initiative Recommendations September 1, 2004 Dear Executive Commissioner Hawkins: The Children’s Policy Council (Council) is writing this letter to express our support for the recommendations developed by the state Texas Integrated Funding Initiative (TIFI). The Council has reviewed the TIFI recommendations and we believe that implementing the suggested changes will improve access and availability of services, increase awareness and education, improve funding for needed services, and provide increased opportunities for collaboration and coordination of services for children with serious emotional and behavioral disabilities. The TIFI recommendations, which have a specific focus on children with severe emotional disabilities and their families, and the Council’s recommendations for “Making Children a Priority” are complimentary, based on consistent values shared by families raising children with disabilities. We all want our children to be happy, healthy, productive, valued members of their families and communities. This is best accomplished by children growing up in families; families needs being identified and addressed; and individualized, flexible services that support what children need when they need it. In spite of the recent consolidation of the health and human services agencies, fragmentation and inconsistencies in children’s services and supports continue. Services such as permanency planning and family-based alternatives are available to children with developmental disabilities, but are not currently available to children with emotional/behavioral disabilities. Expansion of these services to broader populations of children would increase opportunities for children with emotional disabilities to access the services they need and increase opportunities for families to remain intact. We hope you will take the advice of the TIFI members and make the improvements that make a difference. Sincerely, Susan Murphree, Chair Cc: Sherri Hammack, Chair, TIFI <<back to top>> Healthy People 2010 (HP 2010) ObjectivesHealthy People 2010 is a set of health objectives for the nation to achieve over the first decade of the new century. Healthy People 2010 builds on initiatives pursued over the past two decades. The 1979 Surgeon General's Report, Healthy People, and Healthy People 2000: National Health Promotion and Disease Prevention Objectives both established national health objectives and served as the basis for the development of state and community plans. Like its predecessors, Healthy People 2010 was developed through a broad consultation process, built on the best scientific knowledge and designed to measure progress over time. The effort has goals: to increase the quality and years of healthy life and to eliminate health disparities. Healthy People 2010 features 467 science-based objectives. Four of these objectives are particularly germane to the fiscal year 2005 recommendations of the Children's Policy Council to the Texas leadership:
Title V Children with Special Health Care Needs (CSHCN) Core OutcomesThe Title V National Agenda for CSHCN was generated to achieve the Healthy People 2010 Objectives 16-22 and 16-23. In order to receive Title V funding, Texas is required to report on its progress toward achieving the Title V CSHCN Core Outcomes. Texas has added an outcome (S1) to achieve HP 2010 Objective 6-7. Implementing the Children's Policy Council recommendations will contribute significantly to achieving these vital outcomes for our children:
[1] www.healthypeople.gov and www.mchb.hrsa.gov/programs/specialneeds/measuresuccess.htm <<back to top>> Family Support PrinciplesPrinciples of Family Support in Texas
Principles of Support for Children and Youth with DisabilitiesIn addition to the Principles for Family Support in Texas, the following principles apply to children and youth with disabilities.
<<back to top>> Funding PrinciplesPeriodically, the Children’s Policy Council will hear
and receive reports on legislative budget requests, proposed funding
reductions, new grant applications, pilots, and initiatives. The Council
will use the following principles upon which to understand and comment
on funding issues. These funding principles align with the family support
principles and values expressed in the Council’s The following PRINCIPLES will be used as guidelines to review and comment on funding as it affects children with disabilities and/or special health care needs and families requiring health and long-term services and supports. Funds should:
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