Community Developmental Disability Organization. A CDDO has been designated for every area of the state to serve as the single point of entry in order to help coordinate services and supports for individuals with intellectual and/or developmental disabilities (IDD). CDDOs contract with the Kansas Department for Aging and Disability Services. Johnson County Developmental Supports is designated as the CDDO for Johnson County residents.  

IDD stands for Intellectual and/or Developmental Disability. The Developmental Disabilities Reform Act defines IDD as:

1. Intellectual Disability (substantial limitations in present functioning that is manifested during the period from birth to age 18 years and is characterized by significantly sub average intellectual functioning existing concurrently with deficits in adaptive behavior including related limitations in two or more of the following applicable adaptive skill areas: communication, self-care, home living, social skills, community use, self-direction, health and safety, functional academics, leisure and work);

Or

2. A severe, chronic disability, which:
   • Is attributable to a mental or physical impairment, or multiple sensory impairments, a combination of mental and physical impairments, physical and sensory impairments, mental and sensory impairments or a condition which has received a dual diagnosis of intellectual disability and mental illness;
   • Is manifest before 22 years of age;
   • Is likely to continue indefinitely;
   • Results, in the case of a person five years of age or older, in a substantial limitation in three or more of the following areas of major life functioning: self-care, receptive and expressive language, learning and adapting, mobility, self-direction, capacity for independent living, and economic self-sufficiency.
   • Reflects a need for a combination and sequence of special interdisciplinary or generic care, treatment, specialized communications techniques or other services which are lifelong, or extended in duration and are individually planned and coordinated; and
   • Does not include individuals who are solely and severely emotionally disturbed or seriously or persistently mentally ill or have disabilities solely as a result of the infirmities of aging.

Some of the IDD service options available include:

Targeted Case Management: Assists in identifying, developing, selecting, obtaining, coordinating, utilizing and monitoring paid services and natural supports to enhance independence, integration, productivity and community inclusion.

Adult Residential Services: Can range from a few hours of support to live-in or around-the-clock care. Includes assisting with daily living tasks and household chores, social/recreational opportunities and other adaptive skills to increase independence and community involvement.

Day Supports: Activities promote independence, productivity, integration and inclusion and may include facility-based work services, work crews, volunteer opportunities and other community-based activities.

Supported Employment: May include assessment, job development, on the job training, ongoing monitoring of performance, training in skill development, and any ongoing support necessary to secure and maintain competitive integrated work.

Personal Care Services: Provides necessary one-on-one assistance both in the home and in the community. Activities include assisting with daily living tasks and household chores, social/recreational opportunities and other adaptive skills to increase independence and community involvement.

Adaptive modifications: Designed to enhance independence or abilities through purchase of adaptive equipment, assistive technology, or home modifications

Aside from Targeted Case Management, 95% of IDD services in Kansas are funded through a Medicaid program called an HCBS waiver. Other sources of funding include State Aid dollars managed by the CDDO, Intermediate Care Facilities for Individuals with and Intellectual Disabilities (ICF-IID), and individuals opting to private pay.

Home and Community Based Services. HCBS provides opportunities for Medicaid beneficiaries to receive services in their own home or community rather than in institutions or other isolated settings. These programs serve a variety of targeted population groups, such as people with intellectual or developmental disabilities, physical disabilities, brain injuries, and others. Services are provided through HCBS Waiver programs developed and managed by each individual state. State HCBS Waiver programs must:

• Demonstrate that providing waiver services won’t cost more than providing these services in an institution
• Ensure the protection of people’s health and welfare
• Provide adequate and reasonable provider standards to meet the needs of the target population
• Ensure that services are individualized and person-centered

Intermediate Care Facility for individuals with an Intellectual Disability. It is an optional institutional-like alternative to HCBS for those who meet the level of care requirements. This program is specifically geared towards persons who have an Intellectual Disability diagnosis and who often require more intensive care.

• Intellectual/Developmental Disability (IDD)
• Autism
• Technology Assisted
• Brain Injury
• Serious Emotional Disturbance
• Physical Disability
• Frail Elderly

See the KDADS website for more information on each of these waivers and their respective eligibility criteria.

You cannot be on two waivers at the same time. However, since each waiver has its own set of criteria it is possible to be eligible for more than one waiver.

Contact the CDDO to start the intake process. Once the CDDO has received all your paperwork the eligibility process can begin, of which there are two components: program and functional. Program eligibility first looks at whether a person meets the definition of IDD as outlined in the DDRA. If a person is determined program eligible, they are then assessed with a functional assessment to determine if they are eligible for HCBS IDD funding.

You can get on the waitlist as early as age 5.

There is not. However, for someone with an intellectual disability evidence of the disability is needed prior to the age of 18, and for someone with a developmental disability evidence of the disability is needed prior to the age of 22. 

Kansas has approximately a 10 year wait for HCBS IDD funding, so it is recommended you get on the waitlist as soon as you can, even if you don’t feel you need services right now.

Yes. Just like your doctor’s office, the CDDO must abide by HIPAA requirements when it comes to Protected Health Information (PHI). The CDDO will not share any of your records without a current release of information on file.

The Eligibility Determination Specialist will confirm receipt of the submitted documentation. It may take up to 45 days to determine program eligibility from the time all relevant paperwork is submitted to the CDDO. If more documentation is needed or requested the 45 day timeline resets. The CDDO will contact you about next steps once program eligibility has been completed.

The CDDO will send you a letter indicating why you were found program ineligible. You will have appeal rights and can reapply if at any time your needs change.

The CDDO will reach out to you to schedule a functional assessment which determines whether you are eligible for HCBS IDD funding. If you are eligible for HCBS IDD funding, then your name gets placed on the statewide waitlist.

If you are found functionally ineligible that means you ‘Tiered 0’ and do not meet the level of care criteria for HCBS IDD funding. Since you do not meet the level of care requirements to receive funding the State of Kansas is unable to add your name to the statewide waitlist. The CDDO will perform the functional assessment with you annually until you either a) become functionally eligible, or b) decide to terminate program eligibility and have your file closed.

Services are primarily funded through HCBS, which is a Medicaid program. In Kansas, Medicaid is called KanCare. This means in order to receive funding you not only need to meet the IDD waiver requirements but also the KanCare financial eligibility requirements, which is a separate process. There is also the option to private pay for services if you do not have KanCare and/or you have the financial means to do so.

Even though waiver programs are federally and state funded, the state gets to manage those funds. The level of funding available is dependent on several factors such as: cost effectiveness of the program, the overall number of people requesting waivered services, state budgets, legislative priorities and more. Another factor to consider: the IDD waiver is typically a lifelong waiver, meaning once you are found eligible you are likely going to remain eligible for the duration of your life. Establishing placement on the waitlist communicates the need and assists in the future planning for those services.

Right now it’s approximately 10 years long and is based on the last person to get offered funding. This changes depending on the amount of funding available and other factors.

Yes. You do not have to be a KanCare beneficiary to get placed onto the waitlist. You also always have the option of private paying for services while waiting.

Yes, see the resources section of the CDDO website for additional services. Services people often utilize include: Kansas Working Healthy, STEPS, Vocational Rehabilitation, and Targeted Case Management. None of these programs have a waitlist. TCM is Medicaid funded but is not a waivered service. A TCM can help find and coordinate other various community resources and supports and is often a wealth of information on navigating all options.  

The CDDO website has a list of all the Targeted Case Management agencies currently open for referrals. It’s recommended that you contact one or more individuals/agencies to see if they might be a good fit for you and meet your needs. Some questions you may want answered include:

• Do I get to choose the individual TCM or does the agency assign someone?
• What kinds of training does the TCM receive?
• How does the TCM stay informed of all options available in the community?
• How often and in what ways will the TCM have contact with me?
• What are the TCM’s responsibilities?
• What happens if the TCM leaves the agency?
• What are the options for reaching someone or leaving a message after office hours?

Once you are ready to make a TCM selection contact the CDDO Choice and Referral Specialist at 913-826-2504 so that you can fill out and sign a choice form.

Around age 18 many people start looking into applying for Social Security SSI (supplemental security income) along with KanCare (Kansas Medicaid). Once you have Medicaid you can get a TCM, even if you are still on the waitlist. Many families also start preparing early on through avenues such as Special Needs Trusts and ABLE Savings accounts so that SSI and Medicaid financial requirements will be met when the time comes. Additionally, the CDDO sends out a yearly letter for you to mail back while you are on the waitlist in order to confirm your contact information.

If you are program and functionally eligible there is a process by which you might access services if you meet the KDADS definition of a crisis:

• having confirmed abuse, neglect or exploitation substantiation or law enforcement documentation; or
• being at significant, imminent risk of serious harm to self and/or others.

If you feel you meet either of the above criteria it is highly recommended you first work with a Targeted Case Manager who will assess your situation, gather all relevant documentation, then complete and submit the crisis request to the CDDO on your behalf. If you do not have Medicaid please contact the CDDO (or have the TCM you would like to work with contact the CDDO) as there is a mechanism to help pay for a TCM in these types of situations.

You must first be determined program and functionally eligible through the CDDO. There are currently three waivers that allow for an automatic transition to the IDD waiver: Autism, Technology Assisted, and Brain Injury. A waiver transition is initiated at the state level only.

The waitlist is managed by the State of Kansas and funding is released by the state legislature. When and how often that happens depends on many factors. The CDDO can only offer an estimate based on the last person in Johnson County to get a funding offer.

The state mails out a letter to the address they have on file (provided by the CDDO) in which you must indicate whether you want to accept or decline the offer of funding. The CDDO is also made aware of your funding offer and will reach out to you as well. Because of this it is important to contact the CDDO anytime your contact information changes while on the waitlist.  

Yes. Many agencies affiliated with the CDDO are willing to work out a private pay arrangement. Agencies have to abide by the same licensing and other regulatory requirements for individuals private paying as they do for individuals receiving waiver funding.

You do not have to accept funding if you do not need it. However, if you decline funding and later on decide you want or need it, you will have to start the process all over again, including going back on the waitlist. Alternatively, you could accept the funding and then utilize a minimal amount of services in order to remain on the IDD waiver.

Please contact us if you plan on moving. If you end up moving out of Johnson County while still remaining in Kansas, then we would send your file to the corresponding CDDO and your place on the waitlist would remain the same. However, if you move out of state, your file will be closed, and you will need to contact the IDD agency of the state you are moving to. In the event you come back to Kansas or Johnson County you would need to start the process all over again from the beginning.

Return the form to KDADS indicating you would like to accept funding. The CDDO will also reach out to you (or your Targeted Case Manager if you have one) to schedule a new Functional Assessment (BASIS) and provide you with all of your service options. If you do not yet have KanCare, you will need to apply at this time. You will have the option of selecting one of three MCOs or Managed Care Organizations who will then assign you a care coordinator (this is not the same thing as a Targeted Case Manager). The care coordinator will meet with you to determine what services you want and need. At that point you will want to select a TCM, if you don’t already have one. Your TCM will then work with you, your Care Coordinator and the CDDO to get the services you need in place.   

MCO stands for Managed Care Organization. The State of Kansas has contracted with three different health insurance providers to provide all Medicaid services. The three current MCOs are:

• Aetna
• Sunflower
• United Healthcare

When you apply for KanCare you will be asked to select one of the three MCOs. Once you are on the IDD waiver the MCO authorizes the specific services you want by completing a Needs Assessment and a Person Centered Service Plan. Since KanCare is also health insurance, the MCOs contract with many different health providers. If you are unhappy with your selected MCO you may choose a new one at the time of the annual open enrollment or you may contact the KanCare Ombudsman by calling 1-855-643-8180.

The CDDO maintains a network of affiliated providers. You choose your provider from this network through the signing of a choice form. The CDDO will never assign you to a provider. You can find a current list of providers by service type here. A provider must sign an affiliate agreement with the CDDO in order to provide services. The CDDO provides quality oversight monitoring of all affiliated providers. In order to bill KanCare, providers have to enroll as a Medicaid provider with the State of Kansas as well as contract with at least one MCO. Additionally, Day Support and Residential Support providers must meet licensing requirements set forth by KDADS.

IDD waiver funding generally only provides funding for staff support. The exceptions being Assistive Services and Medical Alert Device. This means (depending on the services you utilize) you are responsible for meeting your needs when it comes to things such as food, rent, utilities, transportation, etc.

Additionally, depending on your financial situation you may be required to “share the cost” for your services in the form of a client obligation. The general formula is as follows: Total income-1,177 (known as the Protected Income Limit)+allowable expenses=Obligation amount. If you have a client obligation it is paid to your service provider.

You always have the option to change providers for any reason and at any time. If you would like to do so please contact the CDDO’s Choice and Referral Specialist or call 913-826-2504 so that you can fill out and sign a choice form. However, the CDDO would recommend you first try and resolve any issues you have directly with your current service provider. The provider may be unaware you are unhappy and might be more than willing to help correct things. Additionally, providers often have internal grievance processes. Your TCM can help facilitate this on your behalf. If that’s not possible you can contact us here. The CDDO also has a Dispute Resolution process overseen by the Council of Community Members located here.

Your TCM can assist you in accessing more services. You can also speak with your MCO Care Coordinator. Once new services have been authorized you will be able to select a service provider by filling out and signing a choice form through the CDDO.

No. If you are over the age of 18 and do not have a court appointed legal guardian, you have the same rights as every other legally responsible adult. Even if you do have a legal guardian you still have rights and responsibilities. Those rights can be found here, in the handbook you receive at your annual BASIS meeting, from your TCM, or from any of your providers.

Generally, you should be included in all your decisions regardless if you have a POA, guardian or conservator.  The power of attorney only allows your agent to do the things you would want done for you. It does not limit your ability to do things for yourself. Depending on the language of the document the Johnson County CDDO may need to consult with their own legal department before accepting a POA document.

If you plan to move within the state of Kansas your funding or spot on the waitlist will stay with you. Please contact the CDDO to begin this process. If you plan to move outside the state of Kansas your file will be closed, and you will want to contact the state IDD agency of where you are moving to. If you return to Kansas in the future, you will need to contact the CDDO to restart the intake and eligibility process.

BASIS stands for Basic Assessment and Services Information System. It’s a functional assessment tool developed by the State of Kansas to determine the level of funding a person is able to receive for HCBS IDD services. The BASIS includes an information section which includes your name, address, guardian information, etc., and an assessment section which includes information about your medical conditions, mobility, cognitive abilities, adaptive abilities, and more. Each BASIS assessment returns a value from 0-5 called a Tier score. A Tier score between 1 and 5 means you are functionally eligible for HCBS IDD waiver funding. A Tier Score of 0 means you are ineligible for waiver funding. The CDDO works with you and your TCM to schedule this assessment on an annual basis. Individuals within your circle of support are encouraged to attend, which could include: significant others, parents, legal guardians, service providers, or other people who might have info to provide from the past 12 months.

It’s a requirement that all HCBS IDD waiver participants have a current BASIS/Functional Assessment completed within the last 365 days. This allows the KanCare MCO to continue to authorize funding for services which in turn allows your provider(s) to get paid. Annual functional assessments are not needed for those on the waitlist.

A Tier 0 means you have been found functionally ineligible for services and KanCare will no longer fund any IDD waiver services you might be utilizing (this does not include funding for your TCM). Your HCBS funding will continue through the end of month from when you were assessed. The CDDO will send a letter to you and your TCM detailing what this means, and you will be offered the opportunity to appeal this action directly to the State.

If you have a Targeted Case Manager speak with them first. They can help weigh all of your options and help ensure you are making an informed decision which is in your best interest. If you do decide to terminate services, the CDDO will have you sign a form indicating your decision and your file will be closed. If you were to decide you needed services again in the future you would have to start the process all over again, including going back on the waitlist.

Yes! The CDDO is always looking for interested citizens, people receiving services, family members, and more to serve on either the Council of Community Members, the Quality Assurance Committee, or both. If you or someone you know is interested or would like more information, please call or email a member of the CDDO. Other ways to get involved include advocacy efforts at the local and state level (such as contacting your state legislators) or volunteering with affiliated providers, or simply sharing about CDDO services with your family, friends, neighbors and more.