"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has." -- Margaret Mead

"Empowerment is when you have gained the confidence in yourself to have the light bulb go on in your head. You realize you can take control of your life and you understand that now you have done it." -- Nancy Ward

"An individual can achieve personal power, but the true power comes from uniting with others in shared beliefs . . . . It is my dream that the disability community will recognize the need to celebrate their sameness and let go of their differences so that we might sustain our collective power to live the real dream." -- Becky Ogle

An Introduction to the Services System in Iowa
Here in Iowa, services and supports are made available to people with mental retardation, developmental disabilities, brain injury, and mental illnesses with the help of public funding. Public funds for such services come from the federal government, the state government, and Iowa's county governments.

Federal programs such as Medicaid provide necessary medical care and services for individuals who meet financial eligibility requirements. Medicaid is often called "Title XIX" (or "Title Nineteen") because it was created by Title XIX of the federal Social Security Act. Medicaid is also referred to as an "entitlement" program because individuals who meet the eligibility requirements are "entitled" (or have a right) to receive the benefits. In addition to medical care, Medicaid provides a large share of the funding for many types of services available to individuals with disabilities.

Each state that receives Medicaid money must "match" the dollars paid by the federal government with a certain amount of state dollars. In general, for each two dollars of federal money the state receives to provide Medicaid services, the state must also agree to pay one dollar toward the services. This state "match" is paid with money budgeted by the state from taxes collected within the state (such as income taxes, sales taxes, or property taxes). For disability-related services that are not covered by Medicaid, a large share of the funding in Iowa has traditionally come from county property taxes.

In 1995, the Iowa General Assembly passed legislation commonly known as "Senate File 69." This change in the law gave counties more control over how they choose to spend public funds to provide mental health and disability-related services. The change was designed to help counties cut costs by allowing them to make decisions about how to use their own property tax dollars most efficiently, and by shifting some of the costs previously paid by counties to the state. This change in the law gave counties greater flexibility in decision making, but it also limited the total amount of money they have available to spend for services.

As a result of Senate File 69, each county is now required to develop a "county management plan" which describes how persons with disabilities will receive appropriate services and supports within the county's "services" budget.

As a person with a disability, or the parent of a child with a disability, you have a right to participate in the development of your county's management plan. To participate effectively, you need to have an understanding of some of the requirements for what must be included in a county management plan and how the plan is developed.

What is a county management plan?
A county management plan is a written plan for organizing, financing, delivering, and evaluating services and supports for individuals with mental retardation, developmental disabilities or mental health needs. Each county in Iowa must make its plan for services according to specific requirements established by state law and regulations. The first county plans were developed and went into effect in 1996. Since that time, each county has been required to review and update its plan once each year. Beginning April 1, 2000, each county must complete a "strategic plan" every three years, and make a review of the plan every year. This is a new requirement that means starting in 2000, each county must develop and maintain a "policies and procedures" manual for its county services system.

County Management Plans must be submitted to the Iowa Department of Human Services for approval. (Starting in 2000 each county management plan must include the county’s policies and procedures manual also.) Any "amendments" (or proposed changes) to the plan must be submitted to the DHS for review and approval. Two or more counties may work jointly to develop a single, shared plan for services. Several

groups of counties in the state have chosen to use this cooperative effort in planning for services.

Why is my county's management plan important to me?
If you are a consumer of disability-related services or if you have a family member who uses such services, you may be directly effected by what your county chooses to include in its county management plan--and what it chooses not to include. As an example, if you have been receiving the service of transportation to and from a job or day activity site and the county revises its plan to no longer include the service of transportation, funding for that particular service may no longer be available to you.

All counties must involve consumers and family members in the development of the plan, and show how their input was considered in the final plan. This is a very important requirement because it is your key to participating in the plan development process. By participating in the process, you have an opportunity to let county planners know--from your point of view--how well the system works and how you think it can be improved.

What are the basic rules all county plans must follow?
Because the county plan system was established by state law, a state agency is responsible for administering (or managing) the system. The Iowa Department of Human Services ("DHS") is the state agency responsible for making a set of administrative rules that the counties must follow when writing their plans. The DHS rules govern the county management planning process and establish most of the requirements discussed in this section of the Guide. The DHS rules also describe three basic principles for the services system in Iowa: Choice, Community, and Empowerment.

Services and supports provided under the county management plans are to be individualized to meet each person's needs. Each county's plan must provide for an "array" (a selection of various types) of services and supports to assist individuals with disabilities. Those services and supports are to be designed to help consumers:

-- to be as independent as possible,
-- to be as productive as possible, and
-- to be integrated into their communities as much as possible.

Because each county must work within a fixed budget for the year, county management plans are a form of "managed care" and are sometimes referred to as "Managed Care Plans."

What is Managed Care?
You may be familiar with what it means to have a "managed care" provider for medical services. Generally, it means that the system of services is "managed" (or coordinated) by an administrator in an effort to keep costs down and still deliver high-quality services. Managed care may also mean that there are limits placed on the amount of services available to an individual, the type of services available, the length of time services are available, and the providers who are approved to receive payment for services.

Counties also have the option of "contracting" with a private organization or service provider to manage their service delivery system. If a county chooses to do this, they would enter into an agreement with the organization to manage the services system, rather than directly hiring their own employees for management of the system. (As an example of a contracting agreement that you may be familiar with, a company called Merit Behavioral Care has been "contracted" by the state to provide mental health services for individuals in Iowa who receive funding from Medicaid.) Under the county plan system, individual counties (or groups of counties) may also enter into contracts with private companies to manage their disability-related services.

A managed care plan "coordinates" access to the system. That means an individual must go through a specific process to request and receive services and funding. Each county is required to create a "single point of entry" process, known as the "Central Point of Coordination," or "CPC."

What is the Central Point of Coordination?
The Central Point of Coordination, or county "CPC," is the administrative "gatekeeper" for service requests. All service requests must go through the CPC and be approved by the CPC for funding. Each county has a CPC Administrator who is the person responsible for determining the eligibility of applicants and approving or denying service requests. This is also called the "single point of entry" because all applications are forwarded to this one point for review and approval. This does not mean that all applications have to be made directly to the CPC Administrator. It does mean that whenever an application is made at an "access point," it will always need to be forwarded to the CPC for approval.

What is an access point?
An "access point" is anywhere that has been designated by the county as a place where an initial request for services can be made. Access points will be listed in the county plan, and will usually include places where individuals would ordinarily go seeking services, such as hospitals, community mental health centers, human services agencies, and local DHS offices.

You can get specific information about access to services in your county by contacting the CPC Administrator or your local DHS office. County management plans are public records that must be made available to the general public and may be reviewed upon request at your county courthouse. You can also request a copy of the plan. The county may charge a reasonable fee for photocopying.

What is included in a county management plan?

(1) AN OVERVIEW of what is included in a county management plan: Each county plan must explain what services it will offer, what eligibility requirements individuals must meet to qualify for services, and how services can be obtained. It must also include information about future plans for the system and how the county intends to evaluate and improve the way services are delivered. Each county plan must also explain an individual's right to appeal decisions that deny requested services, and must explain how an appeal can be made. It must also explain how confidential information about individuals will be protected.

(2) A QUICK LIST of what each county management plan must explain:
-- what services are offered
-- who can receive services
-- how to ask for and receive services
-- future plans for the services system
-- how to appeal if you are turned down for services
-- how private information about you will be protected

(3) A DETAILED LIST of what each county management plan must include:
-- a description of the area covered by the plan (one county or more than one county in the case of a shared plan)
-- a description of the current services system in the county
-- a description of the services system the county plans to have in three years
-- a description of the steps to be taken toward changing the system
-- a description of how progress toward changing the system will be measured
-- a description of how people can get access to needed services and supports
-- a description of how the services system will be monitored and evaluated
-- a description of how evaluations will be used to improve the system
-- a description of how the county will provide community services that are flexible, cost-effective, and are provided in the least restrictive environment possible
-- an explanation of how the plan is administered (or managed)
-- an explanation of who is eligible for services
-- an explanation of what services are available
-- an explanation of how services are authorized
-- an explanation of how the county system works with service providers and others to meet people's needs

EACH COUNTY PLAN MUST INCLUDE POLICIES TO ASSURE CONSUMERS:

-- that decisions on providing services are made by individuals or organizations that do not have a financial interest in providing the services
-- OR, if there is any financial interest or other conflict of interest by individuals or groups providing services, it is fully disclosed to consumers
-- AND that the plan meets all state and federal legal requirements that personal information about individuals applying for or receiving services be kept confidential

Iowa's 99 counties have developed about 60 different county management plans. This is because some counties have chosen to work together in developing their plans or have chosen to share the same plan with other counties in their area. Each plan has its own provisions for determining who is eligible for services and what services are available to eligible individuals. For this reason, there are differences from one county to another in both the specific services available and the requirements for individuals to be eligible to receive services. You will need to get specific information about the services in your county from your county CPC, from information available at other "access points," or from the county plan itself.

Because services are provided and funded under the individual county management plans, the services you need are usually funded by the county where you live, but in some cases, they may be funded by a county you have lived in before. For all children, and for some adults, they may be funded directly by the state. This is because Iowa's system for funding services depends on where you have "legal settlement."

What is "Legal Settlement"?
As discussed earlier, Iowa counties either have or share financial responsibility for certain services to people with disabilities and mental illnesses. "Legal settlement" is a method created in Iowa's state law to determine which county is responsible for paying for the services needed by a particular individual.

The county where you live is your county of residence. The county responsible for funding services for you is your county of legal settlement. These may be the same county, or they may be two different counties.

If a person receiving services has lived in the same county all his life, that county is his county of legal settlement. Since families and individuals move, however, a person's county of residence may change. That person's county of legal settlement may sometimes change also, but it doesn't always change just because the person moves.

Legal settlement changes when an individual (1) has lived in a new county for one full year, and (2) has not received services, treatment, or support from a community-based provider during that time.

-- If you move, and continue to receive certain services in your new county of residence, your county of legal settlement does not change.
-- If you move, and do not receive services, treatment, or support from a community-based provider for a full year, your county of legal settlement does changes.

For children under age 18 who are receiving services, the child's county of legal settlement is the same as that of the child's parents. If that child becomes an adult and moves to another county, but never stops receiving publicly funded services, his county of legal settlement will stay the same. No matter where in the state that person lives as an adult, as long as he has continued to receive services, he will still have legal settlement in the county where he lived on his 18th birthday.

On the other hand, if that person moves to a different county and does not receive any services, treatment, or support from a community-based provider for one full year, that person "acquires" legal settlement in the new county. The new county would then pays for any services approved in the future.

When an individual moves out of the state for more than a year, he no longer has legal settlement in any Iowa county. If he later moves back to Iowa and is approved to receive services, the services will be funded by money directly from the state rather than an individual county. The same is true for a person who moves to Iowa, has never lived in the state before, and needs services during his first year of residency. Funding for persons who do not have a county of legal settlement is referred to as a "state case" because the state is responsible for the share of funding that the county would ordinarily pay.

The state also provides the "county" share of funding for services to all children under the age of 18 in Iowa, even though they are considered to have their parent's county of legal settlement.

It is not your responsibility to determine where you have legal settlement, but you should understand that the determination is very important to each county because the county needs to have enough funds in its budget to pay for necessary services to those individuals who have legal settlement there. You should also be aware that counties will sometimes disagree about which one has the funding responsibility for an individual.

You still have the right to have certain services paid for even if there is a disagreement about where you have legal settlement. Disagreements about legal settlement are matters for county governments to work out between themselves or through legal actions.

If you live in a county different from your county of legal settlement, you need to be aware that you can only receive funding for services approved by your county of legal settlement, even if the county where you live offers more or different services. This is because the county plan of your county of legal settlement determines which services you are eligible to have funded.

Does that mean I may have to work with more than one county to get services?
Even if your county of legal settlement is different from the county where you live, Iowa's system provides for you to apply for services through the county where you live. If you have a different county of legal settlement, your county of residence will contact the plan administrators in the funding county to coordinate their efforts. Once application is made, the two counties will determine how responsibility for arranging services will be divided. It is not the responsibility of the individual seeking services to make those arrangements. Services you are entitled to receive should not be denied or delayed because your county of residence is not the funding county.

How do I find out what services I may be eligible to receive?

Each county plan must describe what the eligibility requirements are to receive services and supports. These requirements must be described for each of the eligibility groups covered under the plan. The eligibility groups included under the plan rules are persons with mental illness, chronic mental illness, mental retardation, developmental disabilities, and brain injury. To be "eligible" to receive services means that your disability and your needs for services and supports fit within the range that the county plan covers.

Eligibility requirements may include the type of disability you have, the type of treatment you have been receiving, and the areas where you need assistance (for example: learning, working, daily care). There may also be financial eligibility standards, to determine if you have the ability to pay for your own services. The county would consider your income (the amount of money you earn or the amount of money you are entitled to receive because of your disability) and any other money or property you could use to help support yourself.

Each county plan must describe the "scope" of services available to each eligibility group. Your county's plan will not specify exactly what services are available to you, because services are to be individualized to meet your needs from the list of available services. This list is the "scope" (or range) of services available to individuals in each of the eligibility groups. Each county plan must describe what types of services and supports are available for each of the covered groups. As an example, a plan should show a list of services and supports covered for people with mental retardation, and another list of services and supports covered for people with chronic mental illness.

You should be aware that Iowa law provides that certain services, or a certain minimum amount of treatment must be made available to individuals with mental retardation and individuals with mental illness. Services beyond a minimum level are determined by the county plan. County plans must also describe what services are available to individuals with developmental disabilities (other than mental retardation) and individuals with brain injury. Because state law does not require specific services or treatment for these eligibility groups, county plans can determine what services, if any, will be provided for persons with developmental disabilities (other than mental retardation) and persons with brain injury.

Each county plan must include information on any co-payments that are required for receiving services. If co-payments by consumers are required, they must be based on the individual consumer's ability to pay, taking into account the consumer's income and any other resources (money or property) that they can use to help support themselves.

Each county plan must include a process that allows emergency services to be authorized when needed. This means that the plan must provide a way for consumers to receive immediate services in a crisis situation. As an example, a plan might provide that in an emergency, services would be provided to stabilize the situation and ensure the safety of the consumer and others even if an application for services had not yet been processed and approved for that individual.

Counties may use waiting lists for services as a way to manage costs. If a county includes the use of waiting lists in its plan, the plan must describe how and when a consumer will be placed on a waiting list. The plan must also describe how information about the waiting list will be used by the county to plan for future services.

What types of services are available?

As discussed earlier, each county's plan must list the types of services available to each eligibility group. Each county's list of services may be different. The following list is included as an EXAMPLE of the types of services county plans may offer and as a guide to some of the abbreviations you may see used:

RESIDENTIAL SERVICES:
ICF/MR - Intermediate Care Facility for persons with Mental Retardation.
MHI - one of the four state Mental Health Institutes at Cherokee, Clarinda, Independence, or Mount Pleasant.
RCF/MR - Residential Care Facility for persons with Mental Retardation.
RCF/PMI - Residential Care Facility for persons with Mental Illness.
State Hospital-Schools ("SHS") - one of the two State Hospital-Schools in Iowa at Glenwood and Woodward.

SUPPORT SERVICES:
Supported Community Living ("SCL") - services offered in a consumer's place of residence to help the consumer learn to live more independently or function better as a part of the community. SCL may include training in personal skills, daily living skills, social skills, communication, advocacy, transportation, or other treatment activities.

Respite - services which allow caregivers a "respite" (or temporary relief) from their care-giving responsibilities. Generally, respite services are provided periodically to give parents or family members a short "break" for a day, an evening, or a weekend at a time.

Transportation - services to and from treatment, work sites, day activity sites, or other programs and activities.

TREATMENT SERVICES:
Psychiatric Medication - prescription medicines for the treatment of persons with chronic mental illness.

Outpatient Treatment - counseling and treatment services for persons with mental illness who do not require hospitalization.

Partial Hospitalization - treatment for persons with mental illness.

VOCATIONAL SERVICES:
Supported Employment - instruction and supervision to assist consumers in developing job skills and getting employment in the community.

Work Activity - non-competitive employment opportunities.

OTHER RELATED SERVICES:
Case Management - coordination of the various services and supports needed by the individual, including communication with service providers and funding sources.

Crisis Services - services and supports necessary to stabilize a crisis situation.

Mental Health Advocate - an individual appointed by a district court or county board of supervisors to represent the interests of a person with mental illness who is involuntarily hospitalized.

This list is given only as an EXAMPLE of the range of services possible. Individual counties may not offer all the services shown here, or they may offer other services not listed. Each county plan will specify the types of services offered and the requirements for being eligible to have services paid for under the plan. As you can tell from this list, some services are specifically designed for individuals with a particular disability. Generally, those services will only be available to eligible individuals whose need for services is due primarily to that disability.

You may have heard the term "HCBS Waiver" or "Home and Community Based Services Waiver" used in connection with services to people with disabilities. The Waiver is not included in the list above because it is not a "service", it is a way to fund a group of services needed by an individual who meets the eligibility standards for the program.

What are HCBS Waiver Services?
HCBS stands for "Home and Community Based Services." The purpose of "HCBS" Waivers is to provide necessary support services to people living in their own homes, or in home-like community living situations. Home and Community Based Services Waivers are part of the federal Medicaid program. Every state that accepts federal Medicaid money must have a State Medicaid Plan that explains how the entire Medicaid program will be managed by that state. The HCBS program is a "waiver" program because it "waives" or "sets aside" certain requirements of the State Plan so that funds which would otherwise have been used to support a person living in a care facility or state hospital-school can be used to support that person in a family or a community home.

Waiver services are designed to allow consumers to live in single family homes, apartments, or duplexes in their communities--and to learn to do as much as they can to take care of themselves and live independently. Waiver services are intended to enable individuals who would otherwise need to receive services in a care facility or institutional-type setting to live in a less restrictive place with fewer rules and regulations and greater independence. Waiver services are also available to children living at home with their parents and to adults living with family members.

HCBS Waivers permit federal Medicaid funds to be used for a variety of community services and supports, including case management, supported employment, supported community living, certain types of training, respite care, attendant care, and other family supports. Services such as assistive technology and physical, occupational, or speech therapies can also be paid for through the Waiver.

Costs for room and board cannot be funded through the Waiver, but participants are usually eligible to receive federal income payments such as "SSI" (Supplemental Security Income) to pay basic living expenses. (SSI is a federally-funded program based on financial need. It guarantees a minimum monthly income level for elderly people and people with disabilities who have limited income and resources.) Just as each state writes its own Medicaid Plan, each state also designs its own Waivers (within federal guidelines) and applies to the federal agency that oversees Medicaid programs for approval. Iowa currently has six approved HCBS Waivers. To qualify for Waiver services, an individual must meet certain specific eligibility requirements, but, generally, Iowa's HCBS Waiver program is available to people who can be included in the following groups:

-- The SSI & Handicapped Waiver serves children and adults with disabilities, including blindness, who have been determined to be eligible for Social Security disability benefits.
-- The Elderly Waiver serves adults with disabilities who are 65 years of age or older.
-- The AIDS/HIV Waiver serves children and adults who have a medical diagnosis of AIDS or HIV infection.
-- The Mental Retardation Waiver serves children and adults who have a primary disability of Mental Retardation.
-- The Brain Injury Waiver serves children and adults who have a medical diagnosis of brain injury.
-- The Physical Disabilities Waiver (just approved in August of 1999) serves adults with physical disabilities who have been living in medical facilities. This new waiver provides attendant care services so that individuals with physical disabilities can live in their own homes or other community settings rather than in medical care facilities.

Under Iowa’s current system of county management planning, each county may decide how many waiver "slots" will be made available to applicants. A waiver slot means that funding has been set aside for one individual to receive HCBS Waiver services for that particular year. Generally, counties will base their number of slots on the funding they have available, the number of individuals who are receiving waiver services, and the number of individuals who have applied for and are waiting to receive waiver services.

What are my rights to participate in county plan development?

All "stakeholders" have the right to be involved in the development or amendment of a county's management plan. A stakeholder is anyone who has an interest, or something "at stake," in the development of the plan. Stakeholders include:

-- consumers (people who will be using the services)
-- family members (people who will be supporting or assisting those using the services)
-- county officials (people who will be responsible for how resources are spent)
-- service providers (people who will be making services available to consumers and receiving payment from public funds)

Stakeholders may also include other interested individuals or organizations, such as support or advocacy groups, medical professionals, employers, teachers, or other members of the community. The county has a duty to give all these individuals and groups an opportunity for "meaningful" involvement in the development of their county's management plan.

For involvement to be meaningful, the county needs to make information about the planning process available to all those who are interested during the time the plan is being developed or revised.  This information should include:

-- the time and place of public hearings or meetings concerning the plan
-- the names of the individuals serving on the planning committee

Each county's planning process must include at least one public hearing. A public hearing is an opportunity for any interested person to ask questions or make comments about a proposed plan. The county has a responsibility to inform county residents about the time and place a public hearing will be held. This is usually done by publishing notice of the hearing in the official county newspaper, and may also be done by other means such as flyers, posters, or announcements on local radio stations.

The county also has an obligation to make the hearing accessible to people with disabilities. If you need special assistance or accommodations to participate in a public hearing, you have a responsibility to inform the county of your needs.  The county has a responsibility to provide you with the assistance you need to participate, but you must make your needs known.

Each completed plan must include a list of the people who have been chosen by the county to develop the plan, including the names of any groups they represent. Find out where and when the stakeholders in your community meet and sit in on the next meeting. Meetings are open to everyone and you can learn a lot about the county planning process just by being there.

CONTACT YOUR COUNTY'S CPC ADMINISTRATOR FOR MORE INFORMATION ABOUT SERVING ON THE COMMITTEE FOR SERVICES PLANNING IN YOUR COUNTY.

Each completed plan must also document in some way how comments received about the plan were considered in developing the final plan. Some county plans have met this requirement by including a section that lists each question or concern raised during the public hearing (or hearings) and gives an individual written response to each question or concern. In such an example, a complete response might include the reasons for the county's position, any laws or regulations that apply, and whether or not the particular comment or question resulted in a change being made to the final plan.

Each county plan must provide for an ongoing educational process for consumers and other members of the community. Through this educational process, the county must make available:

-- information on its planning process
-- information on its intake process (how to apply for services)
-- information on its service authorization process (how decisions are made about who is eligible for services and what services will be provided and funded)
-- information must be made available in a format that is accessible to you

In addition to participating in the plan development, individuals who apply for or receive services have the right to challenge county decisions to reduce or deny requested services.

What are my rights to challenge the service decisions of the county?

Each county plan must develop and make available a process for individuals to appeal the decisions of the county regarding the provision of services. This is the county appeals process. After the county CPC administrator has reviewed an individual's application for services, the county must send a written "notice of decision" to the applicant or to a person authorized to represent the applicant. In the case of an application for a child, the notice will be sent to the parents. This written notice of decision must explain whether the requested services have been approved or denied and the reasons why. The notice of decision must also explain the county's appeal process and must outline the consumer's right to appeal the decision of the CPC. (Remember that the county CPC, or Central Point of Coordination administrator, is the person responsible for determining the eligibility of applicants and approving or denying service requests.)

What are my rights to appeal the CPC's decision?

If you are dissatisfied with the decision of the CPC, you have the right to appeal that decision to the County Board of Supervisors. Each county must develop its own consumer appeal process. This process must be described in the plan and must be included with any notice of decision given or sent to an individual applicant.

THE COUNTY APPEAL PROCESS

-- must be based on objective factors (a set of standards that can be applied fairly to all applications)
-- must specify the amount of time consumers have to appeal a decision and the amount of the time the county has to respond
-- must include notice to all parties in formats that are accessible
-- must provide some assistance to consumers in making appeals

Because each county develops its own appeals process, the appeals may take different forms. An appeal from the CPC's decision may involve a hearing, a mediation, a complaint and investigation, or some other method of resolving the matter. In any case, the final determination will be made by the Board of Supervisors for the county funding the services under the process described in the county management plan.

Board of Supervisors' meetings are generally open to the public under Iowa's open meetings law. If the appeal is in the form of a hearing before the Board of Supervisors, and confidential information about the consumer or from the consumer's records will be part of the evidence heard, the consumer has the right to have the hearing portion of the meeting closed to the public.

Generally, you will have the right to be represented by an attorney or an advocate during a hearing or other review proceeding. The county is not required to pay for legal or other representation for individuals challenging its service decisions. If you hire someone to represent you, you will be responsible for paying that person. Often, free or low cost representation is available from legal rights groups or other advocacy groups. (Check the Resources Section of this Guide for information on how to contact such groups.)

The County Board of Supervisors is responsible for making the "final administrative" decision for the county. In the case of an individual who does not have a county of legal settlement (a "state case"), the final administrative decision is made by the DHS. This "final administrative" decision is the final decision of the agency (DHS) or the public body (the Board of Supervisors) responsible for administering a particular part of the law. It is important to understand that a final administrative decision is not truly "final." It is the official ruling of the agency or board, but a final administrative decision can be appealed to a court of law.

What are my rights to appeal the Board of Supervisors' decision?
A final administrative decision such as the final decision of the County Board of Supervisors can be appealed to the Iowa District Court for the county. The rules governing this type of appeal are a part of State law. The same set of rules apply to all appeals from the final decision of any state agency. This is sometimes called a "Chapter 17A" Appeal because it is authorized by Chapter 17A of the Code of Iowa, a state law also known as the Iowa Administrative Procedures Act.

If the denial involves Medicaid-funded services such as the HCBS/MR Waiver you may have specific appeal rights created by the rules for that particular program. For example, an individual who is denied HCBS/MR Waiver services has the right to request a review of the "level of care" determination for eligibility. The level of care determination is the finding that the individual’s need for care reaches the level necessary to qualify for the Waiver. The administrative rules for the HCBS/MR Waiver also allow an appeal of the county's decision to the Department of Human Services.

As you can see, your appeal rights will vary depending on who is responsible for approving or denying the services you have requested and what types of programs are responsible for funding or providing the services. In any case, there are three important points to keep in mind if you are denied requested services:

(1) You are entitled to a written notice of the decision. Any time services you have requested or have been receiving are denied, reduced, or discontinued, you have the right to receive notice in writing of the decision and the reasons for the decision.

(2) You are entitled to notice of your appeal rights. The notice of decision must also explain your right to appeal the decision and explain how you can request a hearing on the matter. The agency making the decision also has a duty to answer any questions you have about the appeal process or give you other assistance in understanding the notice if you need and request it.

(3) You must act quickly to protect your rights. Appeal rights have deadlines. When you receive a notice of decision and explanation of appeal rights, it will specify the amount of time you have to file an appeal. If you do not act during that period of time, you may give up your right to challenge the decision at all. Do not lose your right to appeal simply by waiting too long. If you receive a notice of decision you do not agree with, review your appeal rights immediately to find out how long you have to appeal the decision. Follow the steps given to you for filing an appeal.

Make sure you do what is required before the deadline. If you do not fully understand what you must do to protect your rights or do not feel you are able to request an appeal without help, ask for assistance immediately.

How can I get involved in working to improve the system in my county?
You can work to improve your county's system by participating in the development and review of your county's plan. The county is also required to provide for an ongoing evaluation and quality improvement process for its plan. Consumers of services, family members, and other "stakeholders" are to be involved in this process of evaluating the system. The county plan rules specifically provide that this process must place an "emphasis on consumer input." The evaluation of the system must include at least the following information on consumer satisfaction:

-- the level of consumer satisfaction, consumer empowerment, and qualify of life
-- the level of satisfaction with providers of services
-- how the system is being used
-- how the system is responding to the needs and desires of consumers
-- the number and outcome of appeals by consumers
-- any plans being used to make corrections based on the appeals filed
-- the cost-effectiveness of the system

How can I help the system build participation?
Participation is an ongoing process. Often, even though participation by people with disabilities is sought by county planning groups, boards, and community organizations, some of the steps that would help encourage more participation are not taken.

To be an active and contributing participant in a group, each individual member needs to understand how the meetings are run, what the purposes and goals of the group are, and what each person's role is within the group.

To be an active and contributing participant in a group, each individual member needs to feel comfortable and confident in the situation. For some individuals with disabilities, feeling comfortable and confident may require that all participants make some adjustments in the way meetings are planned and run. For example, adjustments (or accommodations) in the "style" of a meeting might include:

-- adding pictures or visual symbols to printed agendas
-- having personal assistants present during meetings
-- setting a pace everyone feels comfortable with
-- taking short breaks when changing from one subject to another
-- making materials available for review in advance of meetings
-- asking all members to clearly identify themselves before speaking
-- asking for strict enforcement of the rule that only one person speak at a time
-- breaking large groups into smaller ones

People with disabilities who are new to panels or board may also need to train their fellow-members on how their disability affects participation in the group. Groups generally establish a list of "ground rules" to be observed by all members in the course of the meeting or discussion. Disability-related accommodations can easily be included and the entire group can gain a greater understanding of what is needed for all members to participate fully. You might also encourage the services planning group in your county to "go to" consumers to get their input, rather than just inviting consumers to public meetings. If you are aware of consumers or groups of consumers who find attending public meetings difficult or uncomfortable for any reason, you might suggest ways for them to be contacted to share their concerns and ideas over the telephone or in one-to-one or small group interviews.

Getting Involved in Your County's Management Planning Activities

Consumers of disability-related services are the most important people in the county management planning process. If you receive services, you are directly affected by what your county's management plan contains. You may be denied services you need if your county's plan does not include them. You, and your family, have an important interest in your county's plan, and you should be a part of making the decisions about what is included.

Most counties welcome your participation in the planning process. In fact, they need you to share your views so that they can learn what is working and what is not working in your county. To get involved, CONTACT your county CPC today, and ask how to become a part of the team!

ASK for any help you need to participate in meetings, and GO to the meetings. You will not always get what you ask for. There is not enough money to do everything. But every time you tell your county what you need, you are helping to make the system better. That is what it means to participate in the county management planning process.