On June 22, 1999 the United States Supreme Court issued a decision interpreting a provision of Title II of the Americans with Disabilities Act of 1990 (the ADA), 42 U.S.C. §§ 12101 et seq. The ADA is a federal civil rights law that protects individuals from discrimination on the basis of a disability. The protections of the ADA apply to individuals of all ages, with all types of mental and physical disability conditions.
Title II of the ADA pertains to the activities of state and local governments and requires that those activities be open to people with disabilities and that services provided by state and local governments be delivered in a way that does not discriminate against people with disabilities.
Under the ADA, states must administer their programs, services, and activities “in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” This ADA rule is the foundation for the Supreme Court’s decision in Olmstead, et al. v. L.C. and E.W., 527 U.S. 581, 119 S. Ct. 2176 (1999). The Olmstead decision made it clear that the unnecessary segregation of individuals with disabilities is discrimination that violates the ADA. Unnecessary segregation can occur when states administer programs in such a way that individuals with disabilities have no other option than to live in an institution in order to receive needed services and treatment.
The Olmstead decision challenges states to review their current service delivery system and to develop a comprehensive, effectively working plan to offer disability-related services in the most integrated setting appropriate to each person’s needs. The decision interprets the ADA to require States to make community living options available to people with disabilities when three conditions exist:
In May of 2000, Governor Tom Vilsack asked the Iowa Department of Human Services (the DHS) to serve as the lead agency in developing Iowa’s comprehensive response to the public policy issues surrounding community services development, including the Supreme Court’s Olmstead decision. With input from other state agencies, service providers, consumers, advocacy groups, and other stakeholders in the process, the DHS submitted a report outlining the current disabilities services system in Iowa to the Governor on August 31, 2000. The report included information on current initiatives, gaps in existing service capacity, and potentially unserved or underserved disability groups.
From October 20, 2000 through January 19, 2001, a total of 20 Olmstead Teamwork Meetings were held across the State of Iowa to gather input from consumers of disability-related services, family members, and other persons interested in the disability-related service system in our state. The consumer and family input was gathered for the purpose of developing a comprehensive, effective plan to ensure that Iowans with disabilities have access to necessary services and supports in the most integrated setting appropriate to their needs.
The Teamwork Meetings were scheduled with the cooperation of Iowa’s seven regional Centers for Independent Living and Iowa’s thirteen regional Area Agencies on Aging. The schedule included meetings at the Glenwood and Woodward Resource Centers, which provide services to individuals with mental retardation and related conditions, and at two of Iowa’s four Mental Health Institutes (Cherokee and Independence), which provide services to individuals with mental illnesses.
Following is a listing of the 20 regional meetings held:
Over 400 individuals contributed to the information gathering process through the public meetings, as well as letters, e-mails, and faxes. Participants in the Teamwork Meetings were asked to give their input on Iowa’s disability-related services system in five key issue areas, and to consider what is needed in each of those areas to improve overall access to community-based services. Following are the five key issue areas and the central questions discussed for each:
What is needed for individuals who qualify for the level of care provided in institutions to have their health care needs met and have access to necessary medical services while living in community settings?
What is needed for individuals with disabilities to find and to maintain safe, affordable housing in community settings?
What is needed to meet the transportation needs of individuals with disabilities so that they can live successfully in community settings?
What is needed to assist individuals with disabilities in finding, maintaining, and advancing in jobs in the community?
What is needed to give individuals with disabilities meaningful opportunities for making informed choices about the services and supports they receive and about how they live their lives?
Other ongoing groups involved in planning for disability-related services were also invited to share their input. These groups include:
In January of 2001, a statewide Steering Committee was formed to begin the development of a draft plan for Iowa. This Steering Committee, comprised of individuals with disabilities, parents of children with disabilities, and other family members, met for three day-long sessions in February and March 2001 to take the initial steps in developing a “strategic plan” for the State of Iowa to improve the availability of comprehensive community services. The committee’s efforts were principally based on the Report on the Olmstead Teamwork Meetings for Iowa, which outlined the input gathered during the public meeting process.
The Steering Committee also considered the recommendations of other planning reports, including: the Analysis of Iowa’s Six Home and Community-Based Services Waivers by the National Association of State Directors of Developmental Disabilities Services, the CPC Restructuring Task Force’s Objectives for Service System Improvement, the Conner Plan for Community Living, the Three Year State Plan of the Governor’s Developmental Disabilities Council, the Key Coalition’s 2001 Agenda for Change, the 1999 Report on Long-Term Care in Iowa by Ladd & Associates, and the December 1998 Evaluation of Iowa’s Public Mental Health System prepared for the Iowa Mental Health Planning Council.
In addition, the Steering Committee reviewed information on the Senior Living Trust Fund Nursing Facility Conversion and Long Term Care Service Development Grant process, the Medicaid Infrastructure Grant Program, and the federal grant opportunities currently available to states for the implementation of activities in response to the Olmstead decision.
The statewide Steering Committee met on the following dates:
Participants in the Steering Committee planning activities were:
This group of individuals with disabilities and family members completed the first phase in the development of a working plan to address the availability of a complete range of service and long-term care options for individuals with disabilities in Iowa, to build community capacity to provide needed services, and to prevent unnecessary institutionalization.
The Steering Committee’s proposed Working Draft Plan was made available for public comment for a period of 30 days, from April 20 to May 20, 2001. The public comments received were reviewed by the newly organized Oversight and Implementation Committee described in the Draft Plan and have been incorporated into this revised plan, dated June 20, 2001. Information on the plan development process, the Draft Plan, and on-going activities continues to be available to the public on the DHS Website located at:
The Plan that follows represents the recommendations for systems change developed through the Olmstead Teamwork Meetings and the activities of the Steering Committee and the Oversight and Implementation Committee, and a proposed framework for continued planning efforts in cooperation with state agencies to bring about those changes on a systemic basis.
In proposing this plan, the Steering Committee for the Iowa Plan for Community Development recognized and adopted the following recommendations of the U.S. Department of Health and Human Services (with minor modification) as the underlying principles and elements of a comprehensive, effectively working plan for our State:
Principle: To develop and implement a comprehensive, effectively working plan for providing services to eligible individuals with disabilities in more integrated, community-based settings.
Principle: To provide an opportunity for interested persons, including individuals with disabilities and their representatives, to be integral participants in plan development and follow-up.
Principle: To take steps to prevent or correct current and future unjustified institutionalization of individuals with disabilities.
Principle: To ensure that services are sufficient to meet the needs of persons with disabilities to live in their communities.
Principle: To afford individuals with disabilities and their families the opportunity to make informed choices regarding how their needs can best be met in community or institutional settings.
Principle: To take steps to ensure that quality assurance, quality improvement and sound management support implementation of the plan.
Any line that is drawn between “institutional” and “community-based” is blurred at best. It is the opinion of the Steering Committee that such a distinction should not be based solely on how a facility is licensed, how many beds it contains, or even where it is geographically located. The distinction should be based, instead, on the difference between the meaning of an “integrated” setting and a “segregated” setting.
How individuals live and have the opportunity to make personal choices in each type of setting is equally as important as where they live. Individuals living in “institutional” facilities can have significant integration opportunities and be afforded personal choice in their daily lives. Individuals living in “community” settings can remain isolated and segregated from the mainstream of community life if they do not have access to the services and supports they need to be a part of the community and be involved with other members of the community.
The choice of appropriate living arrangement and level of integration desired should be based on an informed and educated decision of the individual, with the advice and support of his or her guardian, advocates, and personal support network. The goal of the individual planning process should be to present each consumer with a range of appropriate options for service delivery and to assure that the individual’s rights are respected and supported in the setting the person chooses.
It is also noted by the Steering Committee that the long-standing history of the provision of public disability-related services in Iowa, as elsewhere, is one of paternalism, segregation, and dependence. While times and attitudes have changed drastically, there still exist aspects of “institutional” thinking that work to keep people more dependent on the system than they need be. We must recognize these factors and actively work to foster independence and to focus on the abilities of consumers.
In the interest of promoting independence, and in an effort to overcome the history of institutional bias, the State of Iowa shall identify and pursue all needed legislative or regulatory actions so that, as individuals access community living with community-based care services, funds that would be available to support them in facilities will be made available to cover the cost of community-based services.
While for most individuals, the cost of providing community-based services is less than or equal to the cost of providing services in a facility, we recognize that for some individuals with severe disabilities, the cost of care in the community may exceed the costs in a facility. Currently, if those individuals can receive community-based services under one of Iowa’s HCBS Waivers, as long as the "aggregate" cost to the State is not higher than the federal regulations allow. The maximum cost is based on institutional reimbursement rates under Medicaid and if an individual’s cost of care is greater than the Waiver maximum determined by the reimbursement rate, they cannot be served under the Waiver.
To prevent this situation from preventing community integration and perpetuating discrimination on the basis of the severity of disability, the State shall identify and pursue all needed legislative and regulatory actions necessary establish reimbursement rates that are sufficient to support the needs of individuals with severe disabilities. The State shall also identify and pursue any regulatory or policy changes at the federal level that are needed to allow adequate reimbursement rates for those individuals with a need for intensive levels of care.
Many home health services are unnecessarily based on a "medical model." Making home health benefits less “medicalized” could result in cost savings. The State of Iowa will redesign and increase home health services with the intent of supporting people in their own homes and preventing admission to nursing homes and institutions. Iowa will develop a comprehensive (less medical) approach for home health benefits, to be used in combination with attendant services (e.g., via the Personal Care Option or HCBS Waivers), to enable many persons to receive services in their homes instead of in institutions.
It is helpful to keep in mind that for persons with disabilities, the objectives of Medical Assistance (Medicaid) are "rehabilitation and other services to help ... attain or retain capability for independence and self care." We want to ensure that services available to individuals living in their own homes are sufficient to meet these minimum needs of persons with disabilities.
To accomplish this change, Iowa must assess the limits on number of hours per day, number of visits per month, and number of months of home health services that are allowed. Current restrictions may not be sufficient to reasonably achieve the objective of the federal Medicaid law regarding "independence and self care." Home health services have been limited by states based on frequency of service and/or length of time over which the service will be provided. A Medicaid service must "be sufficient in amount, duration, and scope to reasonably achieve its purpose." The dollar limits for home health services must be related to the amounts the State would spend to support the person in a nursing home or other institutional setting. Any amount less may force the person to become institutionalized unnecessarily.
The State of Iowa must identify and pursue all legislative and regulatory actions necessary to allow health care services that come under the purview of a professional licensing board to be delegated to trained personal attendants when appropriate. The State must review the Physicians Practice Act and the Nurse Practice Act to ensure that individuals with disabilities who need services generally performed by a licensed professional as a part of their routine daily personal care can use personal attendants or other para-professionals under the training and supervision of qualified medical professional to support certain essential personal care needs.
The Steering Committee for Iowa created this proposed Plan as a process, not a product. One of the continuing activities identified as key to successful community service development in Iowa is the formation of an on-going Implementation and Oversight Committee. This committee, formed on June 1, 2001, is comprised of representatives of the initial Steering Committee and representatives of state agencies and other stakeholders who will assume an on-going role in implementing and monitoring plan activities and in continued planning.
The Steering Committee identified the following series of initial steps recommended to coordinate and focus the State’s efforts to develop and improve access to community services. Because the members of the Steering Committee feel strongly that these are critical activities and must be pursued in a timely manner, they have identified a proposed timeline for each step. The Steering Committee recognizes that the proposed timelines identified in this plan are aggressive and may, for practical reasons, be subject to adjustment in consultation with the Implementation and Oversight Committee and stakeholders. One of the important ongoing functions of the Implementation and Oversight Committee is to identify both the specific activities to be pursued under the Plan and establish timelines for implementation of each activity that are both firm and realistic, as well as to monitor progress and evolution of goals and objectives.
One of the issues that must be addressed is the anticipated cost of changes that are proposed to the State’s service delivery system. One of the limiting conditions on the obligation of states to make community living options available to people with disabilities under the Supreme Court’s Olmstead decision is that “the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of other persons with disabilities.” The Iowa Plan for Community Development must take into account the needs of all Iowans with disabilities and the existing services structure. The quality of life for thousands of people throughout our State is at stake.
Throughout the development process leading to this Plan, the costs of accomplishing systems change have been an issue. State agencies that provide human services are among those currently dealing with significant cuts in the State’s budget for the 2002 fiscal year. County budgets for disability-related services are already subject to spending caps. Funds made available by the Federal Government offer a critically needed funding source to pursue these important activities. It is the recommendation of the Committee that the State makes every effort to fully access and utilize federal funding opportunities, including those provided through the Medicaid program, the HUD Section 8 Housing program, and other federal agency programs administered through state government.
The federal Health Care Financing Administration, just re-named the Centers for Medical Services, has made a series of federal grant opportunities available to States for the purpose of improving community services for children and adults who have disabilities or long term illnesses. In light of the extreme limitations on State dollars to fund systems change activities, the Committee vigorously recommends the pursuit of one or more of these grant opportunities to assist the State in carrying out the activities identified in this Plan.
The steps listed here are not numbered to represent a linear process. Each one identifies a key activity and each activity is a necessary element of this Plan, but each activity will require a separately identified timeline, and several of the activities will, necessarily, be ongoing as others are undertaken.
By July 1, 2001, the Director of the DHS or her designee (working in consultation with other Departments and the Governor’s Office) shall identify the representatives necessary to finalize an Iowa Plan for Community Development and implement its recommendations based on this draft plan and the incorporated public comments received, including, but not limited to representatives of the following:
By July 1, 2001, the Director of the DHS or her designee shall schedule an initial meeting of these stakeholder representatives. This group will serve as the plan Oversight and Implementation Committee (and its functions will include working collaboratively to finalize the timelines and assign responsibilities for duties necessary to implement the Iowa Plan for Community Development. (Note: This group met for the first time on June 1, 2001. A list of the participants is included in the Appendix.)
By October 1, 2001, shall compile a comprehensive list of the Iowans currently living in institutional settings, including the following:
Recognizing that data from the following types of facilities will be less readily available, the DHS shall also establish a process to work with Iowa’s 99 counties, with the corrections system, and with service providers to identify all individuals with disabilities residing in the facilities listed who would potentially be prepared for and desire community-based services.
The State, in cooperation with the 99 counties, shall provide on-going information and education on community options to consumers, parents, guardians, family members, and professionals within the services system.
These information and education activities must:
Information and education activities shall include the development or adaptation and improvement of appropriate plain-language resources containing information on:
The State will identify and support the use of existing resources and/or develop consistent, understandable, and accessible information on individual rights and informed choice to consumers, parents, guardians, family members, and workers within the services system.
By November 1, 2001, the State will develop uniform plain-language resources related to implementation of this Plan, which will include resources and tools regarding individual rights, responsibilities, and informed choice for consumers and family members. This information must include an explanation of the full array of service options and the transition planning process.
By December 1, 2001 (the beginning of the individual assessment process), this “rights” information is to be distributed to residents of facilities, and is to be readily available for distribution to those individuals at risk of entering an institutional facility. As part of the information and education process, a mechanism must be identified to routinely make resource information available to individuals living in the community so that they will not be forced to access the institutional system in order to receive information about community services.
The State will identify a process that will promote consumer rights and individual choice and provide necessary training to members of the assessment teams. The individual assessment process is intended to be consumer-responsive and tailored to the needs of each individual, to include an educational component on choice and individual rights, and experiential training and exposure to different living situations, if needed.
The State will develop or adapt and implement methods for fully presenting the range of living options to individuals before they enter institutional facilities. This process must include pre-admission screening.
Beginning October 1, 2001, each individual entering an institutional facility or applying for admission to an institutional facility shall be informed of the full array of service options. As new service options are developed, there must be ongoing training of professionals to assure that there is system-wide information on the developing options and that all levels of the system are aware of the evolution of the array of service options. The informed choice other resource materials discussed earlier could serve as aids in the information process. (The “Community Living Specialists” discussed later could play an important role in the process as well.)
The State must develop (or adapt) and implement an appeal process for individuals with respect to any eligibility decisions adverse to their wishes, including the determination of their “appropriateness” for receiving services in a community-based living arrangement.
Also by October 1, 2001, the Director of the DHS or her designee shall, with the assistance of the Oversight and Implementation Committee, develop a method to individually assess the needs and preferences of the individuals currently living in institutional settings and implement a process to identify those whose needs are currently appropriate for community based services and who would prefer that services currently being provided in facilities be provided in community or other more integrated settings.
The State of Iowa will explore “best practices” identified in other states, particularly those that have already de-institutionalized their population of persons with disabilities and identify assessment tools or other resources that may be replicated or adapted for use in our State.
The word “assessment” usually describes a medical model of measurement or evaluation that results in a diagnosis or description of a person’s care needs. In this case, the word has been used (for lack of a more appropriate one) to describe a process that is intended to identify not only an individual’s care needs, but their abilities, their preferences, their need for information and education to make informed choices, and other non-medical supports. This process is intended to focus on the individual as a whole person—not merely a medical or psychiatric patient.
The assessment process must identify those individuals with disabilities who could be served in more integrated community settings and their preferences for service delivery. The goals of the individual assessment process are as follows:
Assessment teams may include:
The assessment process must begin with the premise that each individual could be appropriate for community inclusion if reasonable accommodations can be made to assure the person’s safety, health, and welfare. Restrictions on service options contrary to the wishes of the individual would require justification based on the individual’s disability-related needs.
The Implementation and Oversight Committee are to be involved (as consumer and family representatives) in the process of identifying the agencies and/or individuals who will be responsible for determining the expertise needed on the assessment teams and in developing an assessment training process for team members (and/or team leaders).
By February 1, 2002, the assessment team members must be identified.
By March 1, 2002, at least two statewide training days must be held (via ICN) to train assessment team members in the process.
Individual assessments are to begin no later than March 1, 2002 and be completed for all individuals in the following institutional facilities within one year,
Using the following targeted schedule to measure progress:
For those facilities identified in Step Two as the second phase of the data collection process, the assessment process will be completed by March 1, 2004.
For those individuals whose assessments identify a different living situation as appropriate, and who would prefer to change their living situation, a transition planning process must begin within 30 days. A transition plan must be developed for that individual with specific goals and timelines established in consultation with a Community Living Specialist. (Community Living Specialists will be discussed later). An assessment planning process for individuals at risk of institutionalization must also be identified.
The assessment process is intended to identify the full range of living options that are appropriate for each individual based on that person’s needs and desires. The transition planning process is to be a coordinated effort to identify available funding sources, housing, and support services that best meet the individual’s identified needs and wishes.
Each individual living in a facility shall have regular reassessments (according to Medicaid or other regulations), and at least annually. At the time any individual living in a facility is determined to be appropriate for a more community-integrated living situation and expresses a desire for such a living arrangement, transition planning must be initiated and the individual must be either moved or added to a comprehensive waiting list within 180 days.
A resident of a facility may request a new assessment as his or her needs and desires change, or may opt out of the assessment process if no other rules or regulations require assessment.
By December 1, 2001, the State must identify and train Community Living Specialists to coordinate the transition process for individuals who have chosen to leave institutional facilities.
The transition process must be a planned and coordinated effort developed in response to the individual consumer’s needs and preferences, and must involve family members, friends, or advocates throughout the process. Effective coordinated transition services must include:
Transition activities—movement to a more integrated setting, or activities leading to the informed choice of a more integrated living situation—must begin immediately for individuals in cases where the necessary location, services and supports can be secured and funded.
Throughout the assessment process the State will compile information about the individuals who want to move into more integrated settings, but who are unable to immediately secure the living situation, services, or supports necessary to do so. The information gathered must include name, current residence, what specific services and supports each individual needs to live in the more integrated setting, and what county or in what geographic area of the State the individual chooses to reside.
This information is intended to serve two purposes: (1) To aid in locating and bringing together the services and supports that the individual needs to accomplish the requested change in living situation. (2) To provide information that will identify gaps in the services system and can be utilized by the State and by service providers to plan for the development and expansion of community-based services that are responsive to the needs of Iowans with disabilities.
By December 1, 2002, the State will develop a comprehensive list of individuals who want to move to a more integrated setting, but have not been able to secure the resources to accomplish the move, and specific information on the services and supports needed, including types of services, number of service hours, funding sources, and geographic and other personal preferences.
Transition planning must begin for each identified individual with the completion of the assessment process. If there are delays in securing the appropriate living situation and services, or if an individual has not been successfully moved to a more integrated setting within 180 days following the completion of the assessment, that individual must be placed on a waiting list. (Sooner, if it is determined that no appropriate community living options currently exist.) The waiting list must include information on the specific reasons (barriers) to timely transition. The purpose of the waiting list and the information gathered for it is two-fold: (1) To focus efforts on transition activities for those individuals who have not received a timely change in living situation because specific barriers exist. (2) To provide specific information on gaps in the services system for planning purposes.
The waiting list is to be used to assist more people in leaving institutional living situations or remaining in community living situations longer as additional access to services and supports become available to meet their needs. The long-term goal is to use the waiting list information to develop and expand appropriate and effective community-based services that will reduce the size of the waiting list and the length of waiting time, and will eventually eliminate the waiting list itself as the system of community-based services improves.
The information on barriers gathered from the waiting list is to be made available to the Implementation and Oversight Committee and to designated State agency representatives for planning purposes.
The CMS (formerly HCFA) policy change allowing community transition planning to be reimbursed as a Medicaid Targeted Case Management service for up to 180 days prior to an individual’s move out of an institution is a possible funding source for assessment and transition activities. The State must pursue any policy changes needed at the state level to take advantage of this and other recently announced CMS federal policy changes that were made to allow individual states more flexibility to expand the availability of community-based living options.
The State must take an active leadership role in building a stronger, more effective partnership with the 99 counties, and with cities and towns across Iowa to develop and enhance community-based services statewide, including:
As stated previously, this document is intended to be a “living” Plan that will necessarily change over time—as change in the underlying system of disability-related services is accomplished. The Oversight and Implementation Committee identified in this Plan will continue to monitor activities and offer recommendations throughout the life of the Iowa Plan for Community Development. For current information on activities pursuant to this Plan, visit the Iowa Department of Human Services website at:
Or contact: Division of Mental Health and Developmental Disabilities
Iowa Department of Human Services
Hoover State Office Building, 5th Floor N.E.
1305 East Walnut Street
Des Moines, Iowa 50319
(515) 281-5874