State Plan FFY 03
1. individuals with developmental disabilities, including those with the most severe developmental disabilities, are capable of self-determination, independence, productivity, and integration and inclusion in all facets of community life, but often require the provision of community services, individualized supports, and other forms of assistance;
2. individuals with developmental disabilities and their families have competencies, capabilities, and personal goals that should be recognized, supported, and encouraged, and any assistance to such individuals should be provided in an individualized manner, consistent with the unique strengths, resources, priorities, concerns, abilities, and capabilities of such individuals;
3. individuals with developmental disabilities and their families are the primary decision-makers regarding the services and supports such individuals and their families receive, including regarding choosing where the individuals live from available options, and play decision-making roles in policies and programs that affect the lives of such individuals and their families;
4. services, supports, and other assistance should be provided in a manner that demonstrates respect for individual dignity, personal preferences, and cultural differences;
5. specific efforts must be made to ensure that individuals from racial and ethnic minority backgrounds and their families enjoy increased and meaningful opportunities to access and use community services, individualized supports, and other forms of assistance available to other individuals with developmental disabilities and their families;
6. recruitment efforts in disciplines related to developmental disabilities relating to pre-service training, community training, practice, administration, and policy-making must focus on bringing larger numbers of racial and ethnic minorities into the disciplines in order to provide appropriate skills, knowledge, role models, and sufficient personnel to address the growing needs of an increasingly diverse population;
7. with education and support, communities can be accessible to and responsive to the needs of individuals with developmental disabilities and their families and are enriched by full and active participation in community activities, and contributions, by individuals with developmental disabilities and their families;
8. individuals with developmental disabilities have access to opportunities and the necessary support to be included in community life, have interdependent relationships, live in homes and communities, and make contributions to their families, communities, and States, and the Nation;
9. efforts undertaken to maintain or expand community-based living options for individuals with disabilities should be monitored in order to determine and report to appropriate individuals and entities the extent of access by individuals with developmental disabilities to those options and the extent of compliance by entities providing those options with quality assurance standards;
10. families of children with developmental disabilities need to have access to and use of safe and appropriate child care and before-school and after-school programs, in the most integrated settings, in order to enrich the participation of the children in community life;
11. individuals with developmental disabilities need to have access to and use of public transportation, in order to be independent and directly contribute to and participate in all facets of community life; and,
12. individuals with developmental disabilities need to have access to and use of recreational, leisure, and social opportunities in the most integrated settings, in order to enrich their participation in community life.
Environmental Factors Affecting Services
2: Aging in Iowa
The Department of Elder Affairs, area agencies on aging, and Iowa State University conducted statewide needs assessment of non-institutionalized older Iowans, ranging in age from 60 to 104 years. Few older Iowans in the rural areas live near accessible public transportation. About 10% reported they are providing care for somebody else. About half of those in the study lived alone. Health problems that occur when an elderly person lives alone are more likely to create problems for independent living. The elderly who are living alone must have services available to them in order to maintain their independence. There are a number of effects the aging of Iowans has on people with developmental disabilities. There are a large number of middle aged consumers living with aging parents whose own health impacts on their ability to provide care for their son or daughter. Aging parents are acutely concerned about what will happen to their adult child when they become incapacitated or die.
An increased life expectancy for people with developmental disabilities requires the service delivery system provide appropriate services for years and even decades longer. Those with developmental disabilities receiving community services face obstacles to aging gracefully when the supports they use are not available during the day to accommodate their choice to retire and stay home. In addition, whether aging with or without a disability, transportation is a barrier for all Iowans who do not drive or have ready access to someone who will drive them.
3: Shortage of well trained direct care staff
A recent survey of 219 Iowa community providers found the median hourly wage for direct care staff to be $7.60. Though such positions are among the fastest growing in Iowa (at an annual rate of 4.7-4.9%), the pool of available labor continues to shrink due to the inadequacy of wages and a record low unemployment rate of under 3%. This trend appears likely to continue. While recent declines in Iowa's population appear to have been stemmed, it is expected that it will still take until 2010 to regain the state's 1980 population. State and local policymakers have turned their attention to the issue but with little real effect.
Meanwhile, the effect on consumers and their families has been significant. Many find themselves unable to access approved services and supports because provider agencies lack the necessary staff. Consumers benefit and progress with continuity and parents and guardians seek familiarity and reliability in their direct care providers. The high turnover rate among direct care staff has proven detrimental to both.
The shift to more person centered and individualized approaches to service delivery may prove to be another casualty of this crisis. Lack of staff coupled with concern for the safety and well being of consumers is resulting in less programming and attention to individual preferences, needs and growth.
The State Service System
Although each county uses generic state disability definitions to guide eligibility, they apply varying clinical criteria and service limitations within those general definitions. Eligibility is based on specific categories of disability, which are identified in each county's plan. Counties are mandated to serve adults with mental retardation and persons with mental illness who receive services in a state operated mental health institute but there is no requirement to provide services to children or to persons with a developmental disability other than mental retardation.
Counties also have a variety of financial eligibility requirements for access to services, which exacerbates the degree of inequity of access to services for consumers across the state. Recommendations to the Governor and Iowa Legislature propose establishment of uniform financial and clinical criteria and the replacement of current service mandates with a minimum core set of services that can be accessed equitably by all eligible individuals.
2: Funding and Access in the County Managed System
There is little disagreement that funding for services and supports should be managed by the individual's county of residence rather than the county of legal settlement. Reports from the Central Point of Coordination Restructuring Task Force, the State County Management Committee and the MH/DD Service Summit have all included recommendations to eliminate legal settlement. It is generally believed that the establishment of core services and the creation of a funding process that allows money to follow consumers will eliminate the need for legal settlement and will result in a system that provides access based on an individual's county of residence.
3: Federal funding in the State and County Systems
Increased funding for the service system is necessary to meet the growing needs and shrinking resources and there is consensus that it must come, where possible, from federal dollars. This would minimize the impact on state and county government and optimize their existing resources. For instance, Iowa counties estimate that including transportation services in the state's HCBS waivers would save over $1 million dollars annually by leveraging federal funds to help pay for services that are currently financed entirely by the counties.
There has been some activity to increase available federal funding, as evidenced by the 2001 addition of the Medicaid Rehabilitation option for mental health services to the state Medicaid plan. Other efforts though, to implement recommendations resulting from a May 2000 review of the state's HCBS waivers and to add a personal care option to the state Medicaid plan have been stalled by the current state budget crisis. The state's Long Term Care Trust Fund, created to capture federal funds to develop alternative services for Iowa seniors and persons with disabilities served in nursing homes or at risk of such placement, is another victim of the crisis as dollars have been diverted to cover shortfalls in budget areas such as Medical Assistance.
4: Children's Services
The state also funds initiatives designed to assist the families of children with disabilities to keep their child in the family home, including the Family Support Subsidy and Children at Home projects. Additionally, responsibility for payment for services is often shared between the Department of Human Services (DHS) and the Department of Education (DE).
The responsibility for providing and funding services to children who are diagnosed with mental illness or behavioral disorders though is much less clearly defined. Individual counties may fund some services to children if identified in the county management plan, while other services may be available from community mental health centers or the state. The system is fragmented, resources are limited and ultimately many of the costs of serving these children are born by the juvenile justice system.
5: Property Tax Capitation
In 1995 the Iowa Legislature capitated county spending on "MH/DD" services and established the state as an equal funder of services to adults with disabilities. It also limited growth of county "MH/DD" budgets to a percentage determined annually by the legislature. Those allowed growth dollars were to be appropriated to counties to cover rising costs due to inflation and new service consumers and were intended to maintain the state's participation as an equal partner with the counties. In FY 2002 the Iowa Legislature, faced with growing deficits, voted to offset the growth dollars by the unspent MH/DD fund balances held by a few counties. That reduction of some $13 million was intended as a one-time remedy to allow the state to capture the unspent state dollars elsewhere in their budget and force counties to spend down remaining balances. The FY 2003 budget though failed to restore growth to counties, appropriating only $14.1 million and imposing significant restrictions (minimum levies and fund balances) to access of those funds. This appropriation falls far short of the $26 million growth that was available to counties in FY 2001 and will negatively affect the lives of people with disabilities and families as counties, with levies capped and fund balances depleted, respond by reducing services and restricting eligibility. Property tax capitation remains politically controversial, particularly as the state fails to assume its share of the responsibility. While capitation has its supporters, there is growing concern that it limits the ability of counties to serve people with disabilities.
6: Iowa Plan for Community Development
The Plan also served as the basis for the Real Choice Systems Change Grant awarded to the state DHS in 2001. The principal goal of both is to shift the service system from a traditional medical model of evaluation and placement of individuals, to one that is responsive to individual needs and driven by meaningful and informed choice. Both include recommendations for systems change and propose a framework for continued planning, in cooperation with state agencies to facilitate change.
The current state of the economy in Iowa, though is threatening the continued development of community based services. Declines in state revenues, slower than expected growth and increases in Medicaid utilization have significantly reduced available state and county resources. The reduction in state funding to counties ("growth dollars") in particular has forced many counties to eliminate services, restrict eligibility and establish waiting lists for available services. The unavailability of needed state dollars has also halted expansion of the HCBS waiver program and the planned creation of a Personal Assistance Service state plan benefit.
In this environment, the Real Choices Systems Change Grant award ($1.3 million) is considered essential to further efforts to facilitate meaningful and lasting change in the current system. Progress there though, has also been slowed by the state's budget crisis which is impeding the ability of the grant recipient (Iowa DHS) to access the resources needed to implement the workplan.
Community Services and Opportunities
Other strengths include grant initiatives such as the Real Choices Systems Change Grant, Medicaid Infrastructure Grant, the SSA Benefits Counseling Grant, the Rehabilitation Services Administration (RSA) Systems Change Grant, and a Department of labor (DOL) Work Incentive Grant. Iowa is also one of the first 13 states to implement the Ticket to Work. Despite these changes, the system retains an institutional bias that is driven more by funding streams and restrictions imposed by traditional medical models of care than by individual preference.
There are significant gaps in the availability of community-based supportive services statewide, and an absence of coordinated information about available services and living options. Individuals with significant health care or supervision needs often find it easier to access funding that supports them in nursing or other care facilities, than to access the information, service array, and funding needed to support them at home.
Eligibility (clinical and financial) for services and the array of services offered vary greatly from one county to the next. This defines the waiting list on a county-by-county basis making statewide information difficult to obtain and interpret. Counties report to the state those being served and what services are provided but do not have consistent information about waiting lists for services.
The state does maintain information about waiting lists for Medicaid HCBS services though the Iowa General Assembly typically appropriates sufficient funding to fund all waiting applicants at the start of the next fiscal year (July1). The Iowa DHS reports that, at present, the waiting lists for waiver services do not reflect applicants waiting for services but rather the state waiting for completed application information.
Unserved & Underserved Groups
Iowa counties provide funding and administration of services to resident with disabilities. Services and eligible populations are base on categories of disability and identified in the county management plan. Counties must serve adults with mental retardation and those with mental illness who receive services in a state mental health institute but have no mandate to provide services to individuals with a developmental disability other than mental retardation or to persons with brain injury.
Quality Assurance Outcome: Iowans with developmental disabilities and family members have the information, skills, opportunities, and support to live free of adults, neglect, financial and sexual exploitation, and violation of their human and legal rights and the inappropriate use of restraints or seclusion. Quality assurance systems contribute to and protect self-determination, independence, productivity, and integration and inclusion in all facets of community life.
Formal and Informal Community Supports Outcome: Individuals have access to other services available or offered in a community, including formal and informal community supports that affect their quality of life.
If you have any comments or questions please contact the DD Council office at:
617 E. Second Street
Des Moines, IA 50309
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