The Governor's DD Council

State Plan FFY 03

 Key Beliefs
 State Service System
             *   Prevalence of DD  
             *   Environmental Factors
             *   State Service System             
             *   Community Services & Opportunities
             *   Waiting Lists
             *   Unserved & Underserved Groups
             *   Other Unserved & Underserved Groups

Emphasis Areas & Targets
             *   Employment  
             *   Education
             *   Quality Assurance            
             *   Formal & Informal Community Supports
             *   Cross Cutting

Comments & Questions?


People with disabilities and their families have access to supports and services they help to design, develop, and monitor to assure a quality of life necessary to fulfill their life choices and participate fully in society.

The Council identifies, develops and promotes public policy and supportive practices through capacity building, advocacy, and systems change activities that ensure that people with disabilities and their families are included in planning, decision making, and policy setting activities related to services and supports that affect their quality of life and full participation in the communities of their choice.

Key Beliefs:

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.

State Service System & Trends

A. Prevalence of Developmental Disabilities
There are an estimated 52,673 Iowans with developmental disabilities (based on Gollay's incidence figure; 1.8% of the total population).

B. Environmental Factors Affecting Services
Topic 1: Condition of the State
The state finished the FY 2001 budget year with a deficit of $59 million. Continuing declines in business activity and tax collections, unanticipated increases in income tax refunds and growth in the states Medicaid program have resulted in projected minimum shortfalls of $205.5 million in FY 2002 and $212.5 million in FY 2003. Deficits of $62 million in the FY 2002 Medicaid budget were filled with transfers of funds from other sources while spending in other areas of the budget was curbed by several rounds of across the board cuts to state departments. Legislators were called back into special session late in May to make additional adjustments to the FY 2002 budget, including the transfer of funds from the states waning economic emergency funds, and to approve a FY 2003 budget based on May, 2002 projections of a decline in revenues almost double that of the March estimate. Despite a projected FY 2003 shortfall of $93 million in Medicaid and earlier talk of eliminating optional Medicaid coverage groups or services, the program remained largely untouched during that budget debate and was exempted from the 2.2% reduction applied to other areas of the state budget. Not exempted though, has been the MH/DD service system growth dollars that are an integral part of the state/county partnership that serves Iowa adults with disabilities. Set to counties to cover increased service costs and increases in consumers of services, those dollars have been reduced from the $26 million appropriated in FY 2001 to $14 .1 million in FY 2003. The Governor and members of the General Assembly will monitor future projections of the Revenue Estimating Conference closely and additional special sessions of the Legislature may be convened if state revenues continue to decline at rates greater than projected.

Topic 2: Aging in Iowa
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. 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.

Topic 3: Shortage of well trained direct care staff
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 is resulting in less programming and attention to individual preferences, needs and growth.

C. The State Service System
Topic 1: Eligibility and Services in the County Managed System
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. 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.

Topic 2: Funding and Access in the County Managed System
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 individual 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 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.

Topic 3: Federal funding in the State and County Systems
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 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.

Topic 4: Children's Services
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.

Topic 5: Property Tax Capitation
Iowa counties are the primary payers for services and supports to adults with disabilities. In 1998, over half of total tax revenues were collected from property tax revenues with other revenues from income and other taxes. As a rural, agricultural state, farmers pay a large proportion of property taxes, and farm crises of the 1980s and 1990s focused public attention on the issue.

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.

Topic 6: Iowa Plan for Community Development
The Iowa Plan for Community Development is a comprehensive plan to ensure that Iowans with disabilities have access to necessary services and supports in the most integrated setting appropriate to their needs. Consumers of disability-related services, family members, and other stakeholders developed the Plan in response to public policy issues surrounding community services development (including the Olmstead decision).

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.

D. Community Services and Opportunities
Iowa's current disability services system has evolved from a solely institutional one to one less reliant on traditional residential services and more focused on development of a broad range of services. Iowa's system of community -based services has grown to include new initiatives, such as Medicaid for Employed Persons with Disabilities (MEPD) and the Senior Living Trust Program (funding conversion of nursing homes to assisted living and the development of community-based services), that enhance the system. Our present strengths are evidenced in an array of agencies, programs, services, and activities that assist Iowans with disabilities and make communities more supportive.

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.

E. Waiting Lists
The disability service delivery system in Iowa is a complex and fragmented one in which waiting lists are defined inconsistently and do not accurately reflect the level of unmet need in Iowa. The state funds most services to children and the counties manage funding for the majority of adult services. While the state is a partner in funding of the adult system, the locus of control rests with each of 99 counties. The state imposes few requirements on counties and the resulting inconsistencies and inequities extend to include waiting lists.

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.

F. Unserved & Underserved Groups
These include Asians, African Americans, Hispanics/Latinos, and Native Americans. 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.

G. Other Unserved and Underserved Groups
-- People with developmental disabilities without mental retardation
-- Persons with brain injury

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.

Emphasis Areas & Targets

Employment Outcome: People with developmental disabilities get and keep employment consistent with their interest, abilities and needs.

Target Area:
· Increase the number of people with developmental disabilities employed.

Performance Target:
By October 2005, An additional 150 Iowans with developmental disabilities will, as a result of Council initiative, experience an increase in competitive employment with benefits.

Collaborators: University Center for Excellence, Iowa Workforce Development, Iowa Department of Personnel, Division of Vocational Rehabilitation Services, Employment Policy Group, Centers for Independent Living, Iowa Department for the Blind, Department of Human Rights

Education Outcome: Students reach their education potential and infants and young children reach their developmental potential.

Target Areas:
· Schools include students with developmental disabilities.
· Increase conflict resolution between parents and education system.

Performance Target:
By January 2003, as a result of Council initiatives and collaboration, 44 students in regular education will demonstrate behaviors that facilitate the inclusion of students with developmental disabilities in regular education.

Collaborators: State Public Policy Group, Carroll Community School District, Indianola Community School District, Des Moines Community School District.

Performance Target:
By April 2003, Council initiatives will increase by 25% the use of the pre-appeal, mediation or alternative local conflict-resolution procedures to address local and state education system concerns of parents whose children receive services under Parts B and C of IDEA.

Collaborators: The Legal Center for Special Education, Parent Training & Information Center of Iowa, Iowa Department of Education, Iowa Family Support Initiative, Area Education agencies, Local Education Agencies.

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.

Target Areas:
· Increase the number of individuals and family members who advocate for choice, control and flexibility.
· Increase to statewide, access to resources that include person centered and family centered planning.

Performance Target:
By September 30, 2003, A statewide People First Organization will receive status as a 501C3 not for profit organization and have a membership of 100.

Collaborators: People First, Martin Luther Homes, Arc of Iowa, Creative Community Options, Consumer Resource Outreach Program (CROP)

Performance Target:
By November 2003, six community teams led by people with disabilities develop and use leadership skills, goals, objective, strategies and activities to produce change.

Collaborators: Independent Living Centers, Local Commissions for Persons with Disabilities, Local Self-Advocacy groups such as HUGS of Maquoketa, The Rensselearville Institute

Performance Target:
By April 2004, 300 people with disabilities and family members participate in ID Action (Iowans with Disabilities in Action) to increase control, choice and flexibility in Iowa's system of services.

Collaborators: Secretary of State's Office, AARP, Iowa State Association of Independent Living Centers, NAMI of Iowa, Division of Vocation al Rehabilitation Services, Easter Seal Society, Strategic America

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.

Target Area:
· Increase community supports for individuals with developmental disabilities.

Performance Target:
By October 2003, 25 Iowa communities provide at least 1 new support or service to include and integrate individuals with developmental disabilities in that community.

Collaborators:University Center for Excellence, 35 Iowa Communities

Performance Target:
By October 2003, 7000 individuals with developmental disabilities and family members have the information they need to obtain services and supports available in Iowa's communities.

Collaborators: University Center for Excellence, Iowa Department of Public Health, Iowa Department of Education, Child Health Specialty Clinics.

Cross Cutting Outcome

Target Area:
· Increase the number of decision-makers who work to improve the service delivery system.

Performance Target:
By December 2003, 465 policy makers and 10,500 members of the pubic use Council information to improve the service delivery system for Iowans with developmental disabilities.

Collaborators: State Public Policy Group, Strategic America, Key Coalition member organization.

Comments & Questions?

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

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