State Trends Prevalence of DD Environmental Factors State Service System General Racial/Ethnic Barriers Unserved/Undersved Groups
State Trends
Prevalence of DD
Environmental Factors
State Service System
General Racial/Ethnic Barriers
Unserved/Undersved Groups
Domains, Goals & Objectives
Self-Determination
Employment
Education
Community Supports
Comments & Questions?
There are an estimated 51,649 Iowans with developmental disabilities (based on Gollay's incidence figure, 1.8% of the total population).
Between 1999 and 2006, Iowa will produce approximately 54,500 new and replacement jobs each year. The labor force is not growing fast enough to support the projected job growth due to the following challenges:
Iowa has an increasing proportion of people who are aged 60 and over. The group that is 80 and over is increasing more rapidly than any other age group. Iowa's proportion of older adults in the population exceeds that of the United States as a whole. Iowa ranks first in the nation for percentage of persons aged 85 and older; second for persons aged 75 and older; third for aged 65 years old and older; and fourth in the nation of percentage of persons aged 60 years and older.
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. Includes similarities in needs for transportation.
There has been effort at different levels this past year to re-examine the existing service delivery system and redefine the system as one that is responsive to the needs of the individuals it serves. The efforts include the Central Point of Coordination Restructuring Task Force, the Special Task Force on Restructuring Services for Persons with Disabilities, the State-County Management Committee, and the MH/DD Service System Summit. The time is right for thorough re-evaluation of the Iowa System its vision and values that shape it. The Long-Term Care Coordinating Unit released an analysis of the status of Iowa's long-term care system. The report highlighted Iowa's lack of long-term care alternatives, the excessive number of individuals in Iowa nursing facilities compared to national norms, and an increasing number of elderly persons and persons with disabilities who need long-term care. Iowa has both 8,000 empty nursing facility beds and estimated 8,000+ individuals whose long-term care needs are not fully met. Consequently, three State Departments along with long-term care industry providers developed a strategy to move toward a comprehensive balanced long-term care system. This system will support independence through cost effective responsive consumer directed programs that provide alternatives to institutionalization.
Finally the Olmstead decision provides a framework for individuals with disabilities to live in the most integrated setting appropriate to their individual needs. Iowa initiatives that respond to Olmstead include the Senior Living Trust Fund to develop alternatives to nursing home placement and the Adult Rehab Option to the State Medicaid Plan will allow for an array of community based services for persons with chronic mental illness. To prepare for further activities around the Olmstead decision, DHS is pulling all existing plans together for analysis, and convening a planning team.
Inadequate wages for direct care professionals have created a shortage of staff for community service providers. Providers are unable to pay wages or provide benefits that are competitive with other community employers and, as a result, recruitment and retention of qualified staff are at critical lows. 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 has historically resulted in less programming and attention to individual preferences, needs and growth.
The system of providing and funding services and supports to Iowans with disabilities is a complex and inequitable one. Individual counties (Iowa has 99) administer most adult services, which were historically funded largely by county property taxes. As a result, the locus of control is local and eligibility and availability of services vary significantly across the state. The menu of available services is identified in the county management plan and those who are the funding responsibility of a "service rich" county enjoy access to services and supports unavailable to those funded by counties with fewer resources. 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. Recent 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.
Further complicating Iowa's county managed system is the issue of legal settlement, the criteria that is used to determine the county responsible for payment for services to eligible individuals. The county of legal settlement is determined by a set of circumstances related to where and when the individually has historically accessed services and may be unrelated to an individual's current county of residence. The county of legal settlement is not obligated to pay for services not included in their own management plan, and this often presents an additional barrier to receiving needed services. Legal settlement is also a problem for many of the providers of services who have to negotiate individual contracts with each of 99 counties. 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 proposing the elimination of 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 to establish legal settlement and will result in a system that provides access based on an individual's county of residence.
It is generally agreed that Iowa has not maximized federal funding available for community mental health and developmental disability services. Iowa was, for example, one of the last states to adopt an HCBS/MR waiver and many feel that the state has consistently failed to use that and other waivers as creatively or expansively as is allowed. While other states have implemented more flexible, holistic, individualized waiver plans, Iowa's is constructed around a series of service classifications, each with separate definitions and reimbursement methodologies. Increased funding for the service system is necessary to meet growing needs and there is consensus that it should come, when possible, from federal dollars. This would minimize the impact on state and county government and optimize 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. Activities are occurring to increase the available federal funding. The state Department of Human Services (DHS), at the direction of the Iowa Legislature, is developing an amendment to the state Medicaid plan to include the Medicaid Rehabilitation option for mental health services. Consumer Directed Attendant Care was added to each of the HCBS waivers and DHS continues to study the addition of the personal care option to the state Medicaid plan. In May 2000, the DHS retained a consultant to conduct a review of the state's Medicaid waivers and make recommendations to make the waivers more responsive to service consumers. The long term care trust fund created in the 2000 session of the Iowa Legislature will also capture federal funds to develop alternative services for Iowans with disabilities who are served in nursing homes or are at risk of such placement.
Though the provision of services to Iowa adults with disabilities is, with some exception, largely the responsibility of the counties, the locus of control for services to children with disabilities and their families is much less clear. The state funds many services for children with developmental disabilities, most notably services provided in an intermediate care facility (ICF) or those provided through one of the state's Home and Community based waivers (generally ill and handicapped, mental retardation, or brain injury waivers). 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. The DHS, with the Department of Public Health and Department of Education will convene, later this year, a series of three workshops with stakeholders to discuss the issue of Children's Mental Health System Design.
County government largely pays for support services. In 1998, a little over half of total tax revenues were collected from property tax revenues with other revenues coming for income and other taxes. In recent years, voters have been increasingly interested in limiting their property tax burden. Iowa is a rural, agricultural state. Farmers pay a large proportion of property taxes, and farm crises during the 1980s and 1990s focused public attention on this issue. In 1995, the Iowa General Assembly capitated what counties could spend on "mental health" services, and decided that the state would share more financial responsibility for serving people with disabilities. It also limited the growth of county "mental health" budgets to a percentage determined by the General Assembly
These decisions continue to negatively affect the lives of many people with disabilities and families. Iowa has 99 counties, and each of those counties has a slightly plan for providing services. Some counties maintain surpluses to their mental health funds while others are running deficits. Providers, and some counties, maintain waiting lists for services.
Property tax capitation remains politically controversial. Although this has started to change, the state has not lived up to its share of the responsibility for paying for adult services. Many people like the capitation, but others feel it limits the ability of counties to serve people with disabilities.
The most common barriers to the receipt of services and supports by the identified populations remain language and cultural. The absence of culturally competent information, written in ones native language, results in diminished access to accommodations and services. The culture and values of a given population also effect decisions that individuals and families make about accessing services and other assistance beyond their family or cultural community.
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.
Potential Collaborators: Iowa University Affiliated Program (IUAP), Iowa Protection & Advocacy (P&A), Iowa Parent Training Information Center (PTIC), Iowa Family Support Initiative (IFSI), Parent Educator Connection (PEC), Iowa COMPASS, Iowa Program for Assistive Technology (IPAT), Central Point of Coordination Administrators (CPCs), Association for Information and Referral Services (AIRS), Department of Human Services (DHS), Key Coalition, Centers for Independent Living (CILs) Individuals with developmental disabilities and family members, and statewide grassroots advocacy organizations.
Possible Methods & Strategies:
Potential Collaborators: DHS, Iowa State Association of Counties (ISAC) & its Community Services Affiliate, Central Point of Coordination (CPCs) Administrators, County Case Managers, County Supervisors, Service Providers, State Legislators, Key Coalition, Individuals with developmental disabilities and family members, statewide grassroots advocacy organizations
Possible Methods & Strategies
Potential Collaborators: Iowa DHS, CPCs, Service Providers, State Legislators, Key Coalition, Executive Branch, Individuals with developmental disabilities and family members, Creative employment Options (CEO), Iowa Family Support Initiative (IFSI), Iowa University Affiliated Program (IUAP), University of Iowa's Law School: Clinical Law Program & Health Policy Center, statewide grassroots organizations.
Possible Methods & Strategies
Potential Collaborators: Governor's Office, DHS, Key Coalition Member Organizations, State Legislators, local government, Individuals with developmental disabilities and family members,Creative employment Options (CEO), Iowa Family Support Initiative (IFSI), Iowa University Affiliated Program (IUAP), University of Iowa's Law School: Clinical Law Program & Health Policy Center, and statewide grassroots organizations.
Potential Collaborators: Iowa Department of Education (DE), Transition Coordinating Council, Transition Advisory Boards, Area Education Agencies, Parents, Students, Employers, Creative Employment Options (CEO), Iowa University Affiliated Program (IUAP), University of Iowa Law School, Parent Training and information Center of Iowa, Division of Vocational Rehabilitation Services, Association of Business and Industry, Statewide Grassroots Advocacy Organizations, State Public Policy Group (SPPG), Local Education Agencies
Possible Methods & Strategies
Potential Collaborators: Iowa Workforce Development, Iowa Creative Employment Options, CILs, Iowa Department of Personnel, Division of Vocational Rehabilitation Services, Employers, Individuals with developmental disabilities, Iowa Creative Employment Options (CEO), State Public Policy Group.
Possible Methods & Strategies
Potential Collaborators: IUAP, Department of Education (DE), Parents, Iowa Council on Early Access, Early Access Management Team, Iowa Medical Society, Iowa Association of Family Practitioners, Parent Training & Information Center of Iowa (IPTIC), Department of Human Services (DHS), Area Education Agencies (AEAs).
Possible Methods & Strategies
Potential Collaborators: Department of Education, Parent Training and Information Center of Iowa, Iowa Protection & Advocacy, Iowa Family Support Initiative, Parents, Area Education Agencies
Possible Methods & Strategies
Potential Collaborators: Legislators, Area Education Agencies, Colleges & Universities, Division of Vocational Rehabilitation Services, Department of Education, Brain Injury Advisory Council, Department of Human Rights, Individuals with developmental disabilities and family members.
Possible Methods & Strategies
Potential Collaborators: Iowa Department of Transportation, Iowa Department of Human Rights, Central Point of Coordination Administrators, Commission for Persons with Developmental disabilities, Department of Elder Affairs, Department of Human Services, Individuals with developmental disabilities and family members
Possible Methods & Strategies
If you have any comments or questions please contact the DD Council office at:
Governor's
DD Council
617 E. Second Street
Des Moines, IA 50309
Voice/TTY: (800) 452-1936 or (515) 281-9082
FAX: (515) 281-9087
E-mail: akillin@dhs.state.ia.us