Targeted Case Management & IDD Waiver Navigation

Notes from March 15th - Sarah Wren Otto - Targeted Case Management & IDD Waiver Navigation

What is Targeted Case Management (TCM)

• Targeted Case Management of Kansas is a Medicaid-funded service that helps individuals with IDD and their families navigate systems, services, and long-term planning
• "Targeted" means the service is aimed at a specific population: people with intellectual and/or developmental disabilities who are age 5+ and eligible for Medicaid
• TCM is provided by a licensed individual or agency
• TCM responsibilities include:
  • Identifying support needs across life stages
  • Connecting families to medical, social, educational, employment, and community resources
  • Developing and maintaining a person-centered support plan
  • Helping families prepare for transitions (especially adulthood and school exit)
  • Monitoring services regularly once they begin
  • Helping resolve issues when supports are not working
• TCM does not provide direct care — case managers do not transport individuals, prepare meals, schedule appointments, or provide personal care
• Best understood as a system navigator and long-term planning partner
• You can always change providers — you always have a choice in who your case manager is

TCM vs. Insurance Care Coordination

• Insurance care coordinators focus on medical care, authorizations, and utilization review
• TCM focuses on community living, long-term planning, and daily-life supports
• These are separate roles and should not be confused

Home and Community Based Services (HCBS) and IDD Waiver

• The HCBS waiver program is authorized under Section 1915(c) of the Social Security Act
• Allows individuals who qualify for institutional-level care to receive services in their home or community instead
• Kansas operates multiple HCBS waivers: Autism, IDD, Brain Injury, Physical Disability, Serious Emotional Disturbance (SED), Frail Elderly, Technology-Assisted, and others
• The I/DD waiver specifically serves individuals age 5+ who meet disability criteria and functional eligibility
• Waivers are a supplement to Medicaid — important for home and community needs rather than just medical needs
• Waivers are defined by each state — Kansas and Missouri operate completely differently
• Waivers do not transfer from state to state; moving across state lines means starting the eligibility process over

Apply Early: The CDDO and the Waiting List

• The CDDO (Community Developmental Disability Organization) is the entry point for HCBS waiver services in Kansas
• Johnson County CDDO: 10501 Lackman Rd, Lenexa, KS 66219 — (913) 826-2500 — [email protected]
• The waiting list for IDD waiver services in Kansas is currently approximately 9.5 years (as of March 2026, processing September 2017 applications)
• Families should apply even if services are not immediately needed — being on the waiting list early is critical
• If a family applies at age 5, they need to be thinking about what help their child will need at age 15
• Apply for each child separately — if you have two children who qualify, submit two applications
• The intake process includes documentation submission and an in-home functional assessment (MFEI) lasting 1-2 hours
• Required documentation typically includes: birth certificate, Social Security card, IEP (if applicable), medical diagnostics, and medication list
• To apply: visit the Johnson County CDDO Intake & Eligibility page, go to "Contact CDDO," select "Apply for Services" from the dropdown, and fill in the information — they will email you an application
• If already on SSI, you should still apply for CDDO services separately for future adult waiver access

Eligibility: Intellectual Disability vs. Developmental Disability

Intellectual Disability (ID):

• Diagnosis must come from a healthcare professional licensed to make a DSM-5 diagnosis
• Must show substantial functional limitations beginning before age 18
• Characterized by significant sub-average intellectual functioning with concurrent deficits in adaptive behavior
• Must include limitations in two or more adaptive skill areas (communication, self-care, safety, etc.)
• IQ score alone is not the sole determinant — the comprehensive IQ assessment does cover academic areas
• Even with IQ above 70, you may still qualify for Institutional Services but can still qualify for Home and Community Based Services

Developmental Disability (DD):

• Severe, chronic physical or mental impairment (or dual diagnosis of ID and mental illness)
• Must manifest before age 22
• Must be lifelong in nature
• Must cause substantial functional limitations in three or more areas of self-care
• Dyslexia, dysgraphia, and other learning disabilities alone are not classified as developmental disabilities under the IDD waiver
• Does not include individuals who are solely severely emotionally disturbed or have disabilities solely from aging

Assessment tips:

• When answering eligibility questions, describe your child's realistic support needs — especially on difficult days, not best-case scenarios
• Eligibility depends not only on diagnosis but on demonstrated daily living needs (hygiene, medication management, dressing, food preparation, communication, safety awareness)
• Must get IQ tested by a healthcare provider before applying. An IQ test in the school system IS NOT SUFFICIENT. It must be performed by a healthcare provider
• Personal care and residential IDD services require assessment showing the individual is not fully independent

Medicaid and Financial Eligibility

• Medicaid is central to accessing both TCM and waiver-funded services
• Must be Medicaid eligible and the child must be assessed as functionally eligible
• Before age 18, family income may affect Medicaid medical eligibility
• After age 18, eligibility may be based on the individual alone (not the parents' income)
• Once waiver funding is offered, parental income often no longer applies
• Asset limits still matter — accounts in the child's name above $2,000 can affect eligibility
• Kansas ABLE Savings Plan (529 ABLE) allows tax-advantaged savings without affecting eligibility — important financial planning tool
• There is no income consideration for the waiver itself (off the basis of need), but there is for Medicaid health application

Services Available Under the Waiver

Before age 18:

• Targeted Case Management
• Personal Care Services
• Overnight Respite
• Supportive Home Care
• Specialized Medical Care
• Assistive Services
• Children's Residential Supports

After age 18:

• Targeted Case Management
• Personal Care Services
• Overnight Respite
• Supportive Home Care
• Specialized Medical Care
• Day Supports
• Adult Residential Supports
• Supported Employment

How Services Work in Practice

• Medicaid does not allow duplication of services
• Personal care cannot be billed during day services
• Caregivers cannot bill during paid employment hours
• Medicaid-funded caregivers support only the eligible individual
• Case managers monitor services regularly — visiting providers, reviewing routines, checking safety and living conditions
• Day and residential providers may also have their own unofficial internal waiting lists beyond the state waiver waitlist
• Be aware of "client obligation" or cost-sharing requirements
• TCM of Kansas manages caseloads carefully using a weighted system — typically 32-40 individuals per case manager depending on complexity of needs

Timelines and Action Steps

Before age 8:

• Contact your Community Developmental Disability Organization (CDDO) to apply

Ages 10-15:

• Begin transition planning
• Financial planning — ABLE Account, Special Needs Trust

Ages 15-18:

• Transition planning intensifies
• Vocational Rehabilitation Services (Pre-Employment Transition Services available while in public school)
• Think about Supported Decision Making, Durable Power of Attorney, or Guardianship
• Think about post-secondary education options
• Build community connections for adulthood
• Obtain state ID

Ages 18-19:

• Apply for Social Security Benefits (SSI and/or SSDI)
• Apply for Medicaid/KanCare in the individual's own name
• Inquire about adult services and supports from community agencies
• Begin transition of medical providers to adult providers

Social Security and Benefits

• Social Security disability benefits require a separate process and review at adulthood
• Maintain detailed medical documentation
• Schedule phone interviews when applying — the system focuses heavily on treatment history and documentation of ongoing disability
• Understand how wages interact with benefits if the individual works while receiving SSI

Employment and Vocational Supports

• Employment is encouraged whenever appropriate
• Kansas Vocational Rehabilitation Services provides state and federally funded employment supports
• Pre-Employment Transition Services (Pre-ETS) are available during high school for students in public school
• Vocational Rehabilitation is not a waiver service — it is a federal service available separately

Education and Day Programming

• JCCC Supported Education Programs (CLEAR & CONNECT) offer continuing education and transition supports for adults with IDD
• CLEAR program provides noncredit continuing education focused on independent living skills and enrichment
• Homeschooled students can still access related services (speech, OT, PT) through their local public school district — approach the district about evaluation under IDEA
• Students attending private/Catholic high schools who maintain an IEP through the public school district should be considered for eligibility in 18-21 transition programs, though specifics may vary by district
• Consider enrolling in the public school district for at least the last semester of senior year to strengthen access to post-secondary transition programs

Transportation

• RideKC Freedom provides paratransit transportation for individuals with disabilities
• Trips must typically be scheduled in advance; service availability depends on routes and demand

SNAP Food Assistance

• When a loved one is an adult (or age 22 if residing in the family home), they may be individually eligible for SNAP food benefits — up to $200/month
• SNAP covers food only (not toiletries, deodorant, shampoo)
• SNAP benefits can be doubled at farmer's markets through the Double Up Food Bucks program

Mental/Behavioral Health and Co-Occurring Disabilities

• The SED (Serious Emotional Disturbance) waiver applies for ages approximately 4-19 through county mental health via open access hours
• When there are co-occurring intellectual disability and mental/behavioral health needs, the SED system may not be equipped to help (e.g., nonverbal individuals may be turned away)
• Johnson County has the Community Behavioral Health Team (CBHT) — a joint program between Johnson County Mental Health and Johnson County Developmental Supports specifically for individuals with co-occurring developmental disability and behavioral health needs
• Through the SED waiver, services may include: case management, attendant care, wraparound, and family training services
• While on the SED waiver, you receive a case manager because the waiver grants Medicaid

Safety Resources

Blue Envelope Program:

• A voluntary self-disclosure program available through every police department in Johnson County
• Put important documents in a blue envelope — keep it in the car, in a backpack, or with the individual
• If there is a crisis, behavioral health event, or the person elopes and can't communicate, they hand the envelope to the officer
• The envelope tells the officer step-by-step what to do, whether or not they've been specifically trained on the program
• Originally developed in partnership with schools and law enforcement

Take Me Home Program:

• A separate program through the Johnson County Sheriff's Department
• Voluntary registration for individuals who may need assistance getting home

Organization and Long-Term Preparation

• Keep binders or digital records of diagnoses, evaluations, and all paperwork
• Separate school records from adult-services records
• Track communications and deadlines carefully
• Plan early for major transitions — the system moves slowly and requires consistent follow-up
• Get organized across multiple systems: CDDO, KanCare/Medicaid, Social Security, Vocational Rehabilitation, Transportation, Medical Diagnostics
• Ask other parents further down the road to share resources and feedback on providers — peer experience is invaluable

Contact Information

• Sarah Wren Otto, M.Ed., MPA — Managing Director
• Targeted Case Management of Kansas, LLC
• Shares office space with Down Syndrome Innovations
• 5916 Dearborn Street, Mission, KS 66202
• Phone: (913) 229-3643
• Email: [email protected]
• Website: www.tcmsks.com
• Sarah is also on the Board of Directors for Camp Encourage