Understanding Missouri's Service Delivery for Persons with Developmental Disabilities

The Department of Mental Health provides services for Missourians by working to prevent mental disorders, developmental disabilities, and substance abuse by treating, habilitating and rehabilitating persons with these conditions, besides having ongoing public education about mental health. The department is divided into three operating divisions: Mental Retardation/ Developmental Disabilities, Comprehensive Psychiatric Services, and Alcohol and Drug. You may obtain additional information by visiting the Department's web site: http://modmh.state.mo.us

The Department of Mental Health benefits from the counsel of the Missouri Mental Health Commission, which is appointed by the governor with consent of the state Senate. This commission makes major policy and budgetary decisions for the department. Each division is also assisted in its planning and assessment of programs by State Advisory Councils. These Councils network with Regional Advisory Councils. (See Metropolitan Council on Developmental Disabilities) Regional council members give the various divisions local input and address local needs.

The Division of Mental Retardation/ Developmental Disabilities (MR/DD) is responsible for support and habilitation of persons with developmental disabilities. It is estimated approximately 97,599 Missourians have a developmental disabilities such as, but not limited to, these labels: mental retardation, autism, cerebral palsy etc. The Division of MR/DD currently serves more than 24,591 individuals and their families through state and private organizations and agencies. The Division operates 11 statewide regional centers. Region IV which includes the following counties: Bates, Cass, Clay, Jackson, Johnson, Lafayette, Platte and Ray is served by the Kansas City Regional Center. There are five habilitation centers in Missouri. This area is served by the Higginsville Habilitation Center. (See Residential Options)

The Kansas City Regional Center is located at

821 East Admiral Blvd.
P.O. Box 412557
Kansas City, Missouri 64141
816.889.3400 or 1.800.454.2331
TDD: 816.889.3326
Fax: 816.889.3425

• Family members, interested parties, or the individuals themselves contact the Regional Center. The Kansas City Regional Center's Intake Coordinator is Mary Lee Thomas at 816-889-3452. Request an Application for Services. The Intake Coordinator obtains relevant information such as name, age, demographics and reasons for the person being suspected of needing services from the Center. If the referral involves the First Steps Program, an appointment time is scheduled for a Multidisciplinary Evaluation which must occur within 45 days of the initial contact. (See First Steps Program)



• An application packet is sent to the individual/family which includes a release of information form. When the application packet and release form are returned, the Intake Coordinator obtains collateral information from other agencies or school districts regarding testing and evaluations that have been previously conducted.



• The Assessment Facilitator reviews each application for determination of eligibility through collateral information. If the collateral information is sufficient to make a determination, the Assessment Facilitator provides the diagnosis and other necessary information to the appropriate Geographic Service Coordination Team Facilitator. If there is not enough information to make a determination, the Intake Coordinator schedules an appointment for a comprehensive evaluation within 30 days of the completed application being returned to the Kansas City Regional Center.



• The Geographic Service Coordination Team Facilitator, within three days of determination, assigns a service coordinator and sends a letter of notification of eligibility to the individual/ parent/ guardian/ advocate. The Service Coordinator is responsible for doing an initial Person Centered Plan within 30 days.

If a comprehensive evaluation is necessary for eligibility determination:

• The Intake Coordinator will schedule the comprehensive evaluation.



• On the day of the evaluation, the RN and the Psychologist greet the family and explain what will occur throughout the evaluation. The family meets with the Reimbursement Officer concerning financial information. The Psychologist provides the family information concerning their rights and their right to appeal the findings of the evaluation.



• The following evaluations are completed: medical history and physical with RN and Center's physician and psychological testing. The time for testing could last one to two hours. The Psychologist scores the test and determines eligibility.



• An Assessment Staffing is held and the results of the evaluation are shared with the individual and the family. If the individual is determined eligible for services, an initial service plan is completed and assigned to the appropriate geographic Service Coordination Team. A Service Coordinator is assigned and an initial Person Centered Planning meeting is scheduled within 30 days.



• If the individual is determined to be ineligible, the appeal process is explained to the individual and the family.

Service Coordination is a service families use when they need help obtaining needed supports for their sons and daughters. It enables families to find, utilize and coordinate available resources and opportunities in their communities on the basis of individual need. Another term that has been used in the past to describe service coordination is case management.

Although service coordination may vary, typically it includes the following components:

• Intake process to determine eligibility;
• A process for matching the eligible individual with a service coordinator who will gather information about the person's needs and desires;
• A team meeting to develop an individual plan which includes the person being served, the person's family or guardian, representatives of service providing agencies, or any others the person would like to be on the team;
• Agreements on obtaining services designated in the plan;
• A process for monitoring quality of the services and revising the plan, annually or as needed.

Service Coordination may be provided by human service or developmental disabilities agencies and frequently by families themselves. Parents or guardians who arrange for services, therapies, appointments and payments and manage home and social dimensions of their child's life are, in fact, providing service coordination.

Agencies providing service coordination employ service coordinators to support individuals in obtaining the programmatic and support services which they need and seek. Service Coordinators help identify and obtain needed services, advocate for, monitor and evaluate service along with families and guardians. They must provide reliable information, help explore options, coach individuals and families, guide in making informed decisions and gaining access to service and supports. They also should assist in the coordination of service providers to work with the individuals toward consistent goals which reflect the personal needs and wishes of the individuals.

Services should be developed around the individual and family rather than trying to fit them into existing services merely because of availability. Service Coordinators should utilize and strengthen formal and informal resources. Informal resources include family, friends, co-workers and neighbors.

The person or family or guardian holds the ultimate decision making power throughout the process including:

• Control of entry and exit from the system;
• Participation in development of the individual plan;
• Veto power over recommendations made during the individual planning process;
• Right to have an advocate present during the planning process;
• Right to decide which services will be procured;
• Right to refuse as well as receive services.

What is the responsibility of the Division of Mental Retardation and Developmental Disabilities (MR/DD)?

The Division of Mental Retardation/ Developmental Disabilities is one of three Divisions within the Missouri Department of Mental Health. The Division of Mental Retardation/ Developmental Disabilities provides support services to eligible persons who have a developmental disabilities and their families.

What type of services are provided by the Division of Mental Retardation/ Developmental Disabilities? What does a Regional Center offer?

The Division provides a wide array of services which can be accessed through agencies throughout the state known as Regional Centers. Regional Centers provide eligibility determination and referral to contract agencies which specialize in services to persons with developmental disabilities. The primary responsibility of regional centers is to provide to persons with developmental disabilities and their families assistance in accessing needed services and funding for those services.

Who is eligible to receive services from Division of Mental Retardation/ Developmental Disabilities?

Individuals who have a developmental disability. Eligibility is determined by what is known as a functional assessment as opposed to linking eligibility to a specific diagnosis. A developmental disability is defined, in Missouri law, as a severe, chronic disability which is attributable to mental retardation, cerebral palsy, epilepsy, head injury, autism or a learning disability related to a brain dysfunction or any other mental or physical impairment which occurred before age 22. It must be determined that this disability is likely to continue indefinitely and that it results in substantial limitation in two or more of the following areas of major life activities: self care, receptive and expressive language, learning, mobility, self direction, capacity for independent living or economic self sufficiency.

If I suspect my child or family member has a developmental disability, what should I do?
Who should I contact if I believe my child or member of my family is eligible for services?

There are 11 regional centers located throughout the state in the following cities: Columbia, Albany, Hannibal, Joplin, Kirksville, Poplar Bluff, St. Louis, Sikeston, Springfield, Rolla, and Kansas City. The Kansas City Regional Center is responsible for individuals and their families who reside in the area known as Region IV. This regional area includes the following counties: Bates, Cass, Clay, Jackson, Johnson, Lafayette, Platte and Ray. The Kansas City Regional Center is located at 821 East Admiral Blvd, Kansas City. Regional Centers are designed to assist individuals with developmental disabilities in meeting needs related to their disability, through a variety of ways, while maintaining them in their homes and communities. To request an eligibility determination for services, call (816) 889-3400 and ask for the Intake Coordinator.

How long will it take to complete the eligibility process?

There are a number of factors involved in the application, eligibility and service determination process. Typically a regional center is required to make a determination of eligibility within 45 days from when the application is received by the regional center. If additional assessment is needed the time may be extended. If clear information confirming a developmental disability is readily available, it will take a much shorter time. In crisis situations when all the required elements are readily available, the determination and initial service plan may be made within a day or two.

What occurs during the eligibility process?

Application packet is sent to the individual/ family which includes a release of information form. When the application packet and release forms are returned, the Intake Coordinator obtains collateral information from other agencies or school districts regarding testing and evaluations that have been previously conducted.

The Assessment Facilitator reviews each application for determination of eligibility through collateral information. If the collateral information is sufficient to make a determination, the Assessment Facilitator provides the diagnosis and other necessary information to the appropriate Geographic Service Coordination Team Facilitator. If there is not enough information to make a determination the Intake Coordinator schedules an appointment for a comprehensive evaluation within thirty days of the completed application being returned to the Kansas City Regional Center.

The Geographic Service Coordination Team Facilitator, within three days of determination, assigns a service coordinator and sends a letter of notification of eligibility to the individual/ parent/ guardian/ advocate. The Service Coordinator is responsible for doing an initial Person Centered Plan within thirty days.

If a comprehensive evaluation is necessary for eligibility determination:

The Intake Coordinator will schedule the comprehensive evaluation.

On the day of the evaluation the RN and the Psychologist greets the family and explains what will occur throughout the evaluation. The family meets with the Reimbursement Officer concerning financial information. The Psychologist provides the family information concerning their rights and their right to appeal the findings of the evaluation.

The following evaluations are completed: medical history and physical with RN and Center's physician and psychological testing. The time for testing could last one to two hours. The psychologist scores the test and determines eligibility.

An Assessment Staffing is held and the results of the evaluation is shared with the individual and their family. If the individual is determined eligible for services, an initial service plan is completed and assigned to the appropriate geographic Service Coordination Team. A Service Coordinator is assigned and an initial Person Centered Planning meeting is scheduled within thirty days.

If I have a son or daughter or family member with a developmental disability, at what age should I contact the regional center to request services?

Services provided by the regional center are voluntary and you may make application at anytime during your child's/family member's life. Many families only receive service coordination while others families access a wide range of support services. If, however, an unforeseen circumstance arises and services are needed, it would be important to have the eligibility determined so services could be provided in an expeditious manner.

My son or daughter or family member is approaching graduation from high school, is this the time to contact the regional center?

For most families, this is the time when the regional center is needed most in the coordinating of services. The regional center can assist with the transition from school to needed adult support services such as employment, skill training, and any residential needs. The most ideal time to begin coordinating with the school and the regional center concerning your child's needs for adult services is during the development of their transition IEP beginning at the age of 14.

My child or family member has a diagnosis of autism, can the regional center help?

Yes. A statewide autism project exists at each regional center. At the Kansas City Regional Center it is called the Northwest Autism Project. Services/ supports and funding specifically for children with autism can be accessed through this project.

What types of services/ supports are available?

Services/Supports will vary by geographic location and contract providers. There are so many services available that it would be difficult to list them all. You can contact the Metropolitan Council on Developmental Disabilities (816) 889-3422 and request information concerning the Region IV Service Fact Sheet Series. This series is easy to read facts on the services/ supports most requested by families living in the regional area. Each fact sheet provides a brief description of the service, how it is provided and how to obtain additional information. It is recognized that this is not a complete listing of services/ supports within Region IV nor are these the only services/ supports available to families. These fact sheets are only to serve as a reference point from which to begin obtaining information and accessing service and or supports.

How does the regional center determine what services my child or family can receive?

An inter-disciplinary team, which includes the person with disability and their family members, meets to discuss needed services. The members of the team are knowledgeable about services/ supports, where they can be obtained and how to access them. Once a determination has been made of needed services, a person centered/ family directed plan will be developed.

Will I get all of the services I want?

Probably not. You will be asked to consider "Is what I am requesting for my child and family a "need" or is it a "want"? The extent of services is determined based upon the needs of the person with a developmental disability. The solution to meeting those needs may not always be in purchasing a specific service. In some cases, services can be obtained from other agencies and, therefore, do not require funding from the center.

Does the Regional Center provide services?

Generally speaking, the regional center does not directly provide services. The center purchases services from contract agencies licensed by the Department of Mental Health or other national accrediting agencies to ensure the high quality of services delivery.

Are there costs associated with these services?

Yes, some services are exempt from charges while others are based on the ability of the family to pay. You will be asked to complete a Standard Means Financial information form. This is required by state statute and is used by the regional center business office to make sure the person or family is receiving all available resources that they are qualified to receive. If the person could be eligible for additional services/ supports from another agency, the business office will notify the family by letter and recommend they call the particular agency to inquire about qualifying for that service.

Is there an unlimited amount of money available for services?

No. Each regional center receives an annual appropriation of funds that can be spent during a 12 month period ( July 1- June 30). These resources are limited and due to increasing demand for services, not all services can be immediately provided. However, there are opportunities to share resources and collaborate among other state departments to help families to receive the services that they need.

How are services paid for?

There are a variety of funding sources such as State tax revenue, federal funding for specific programs ( i.e., Medicaid Waiver Program), county developmental disabilities tax revenue (County Boards of Services). In some cases, cooperative funding agreements with other state agencies are developed. In other words, there is not one source of funding for services.

If my child or family member is determined ineligible or if specific services are denied, do I have the right to appeal?

Yes, if it is determined that your child does not have a developmental disability, thus ineligible for services from the Division of Mental Retardation/ Developmental Disabilities, you may notify the regional center that you wish to appeal that decision. You will receive written notification that the regional center has received your request to appeal and you may present any information that relates to the appeal in a meeting with the regional center director or representative in order to resolve your differences. All of your appeal rights will be explained in detail and you will receive written material which outlines the various levels of appeal during the initial application process.

What is Service Coordination?

Service Coordination is a service families use when they need help obtaining needed supports for their sons, daughters, family member. It enables families to find, utilize and coordinate available resources and opportunities in their communities on the basis of individual need. Another term that has been used in the past to describe service coordination is case management. Although service coordination may vary, typically it includes the following components:

• Intake process to determine eligibility;
• A process for matching the eligible individual with a service coordinator who will gather information about the person's needs and desires;
• A team meeting to develop and individual plan which includes the person being served, the person's family or guardian, representatives of service providing agencies, or any others the person would like to be on the team;
• Agreements on obtaining services designated in the plan;
• A process for monitoring quality of the services and revising the plan, annually or as needed.

Who should I call if there are problems or concerns with the services I receive from the contract providers?

You should contact your Service Coordinator. It their responsibility to work with you to resolve any concerns and ensure the highest quality of service/ support is being provided to your child/ family.

Can the regional center assist families with school issues?

Your service coordinator can assist you in obtaining information and support as to your rights and responsibilities in relation to educational issues.

Why am I not my child's legal guardian after they turn 18 years old?

Many parents assume that their parental rights continue as long as they are the primary care givers for their child, even when they turn 18 and enter their own adult years. In order to be considered a legal guardian or conservator of an estate for an adult child, the Probate Court must be petitioned. A judge must rule that a person is incapacitated or disabled and in need of a legal guardian.

Does the regional center provide legal services?

The regional centers are not equipped to offer legal advice or services. However, if you need assistance concerning guardianship, your service coordinator can assist in that area or in looking at alternatives to guardianship.

Are advocacy and support groups available to families and persons with developmental disabilities?

There are numerous advocacy groups and support groups throughout Missouri. For information about groups within Region IV, you can contact the Metropolitan Council on Developmental Disabilities at (816) 889-3422 or your service coordinator.