Parent Resource Guide

A comprehensive topic guide drawn from 34 speaker sessions, organized by subject. Click any section to explore detailed notes, links, and source references.

Family Roadmap

Start Here

The Family Roadmap was developed by The Aidan Project to help you and your family navigate developmental delays and support services — wherever you are in your journey. Whether you're just starting to ask questions or looking for the next step, this is a great place to begin.

Mitch Kelly, founder of The Aidan Project, spoke to our group in February 2024 about early intervention therapy access. Learn more about The Aidan Project from that session.

Understanding Your Child's Diagnosis

4 topics

ADHD: Types, Symptoms & Diagnosis

ADHD and Autism Overlap

ADHD: Treatment & Parenting Strategies

Self-Regulation & Executive Functioning

Notes & Resources:

  • VIDEO: Using an Analog Clock to Teach Time Management Skills — Emily Tritz & Brookes Barrack, Oct 2023

    • To help a student "feel" time, we ask the student to predict the amount of time an activity will take and then color in that wedge of the analog clock. As the student is completing the task he sees time elapse in relation to his prediction.

  • VIDEO: "Get Ready, Do, Done", "Plan Backwards and Execute Forward" — Emily Tritz & Brookes Barrack, Oct 2023

    • In order to make progress we have to first understand the goal. Ask the student to explain what the finished product will look like. In light of a concrete goal, ask him to explain the actions required to accomplish it. Then ask him to plan how he intends to accomplish it.
    • This is similar to David Allen's concepts of "What done looks like" and "Next Action". Getting Things Done

  • When a child objects to something new, it could be because he cannot visualize the new thing. Ask him to name 3 things that will be similar to something he knows, and 3 things that are different. — Emily Tritz & Brookes Barrack, Oct 2023

  • "Show and tell me your plan" - A child is unable to accomplish a requested task because he does not immediately internalize what is being asked. — Emily Tritz & Brookes Barrack, Oct 2023

    • Example: You ask your child to go upstairs and get ready for school. 10min later you go upstairs and find him reading Little Critter books in his pajamas.
    • Solution: Ask your child to go upstairs and get ready for school. Then ask him to act out what it means to "get ready for school". Have him pantomime changing his clothes, combing his hair and brushing his teeth.

  • VIDEO: "Match the Picture" — Emily Tritz & Brookes Barrack, Oct 2023

    • Help the student visualize a task or activity by showing them a picture of themselves with everything they need to perform that task
    • Help a student to clean his room by showing him a picture of that space in the "done" state.

Books:

Executive Functioning Resources:

Therapy & Clinical Services

13 topics

Finding a Provider — The Aidan Project Clinic Referrals

ABA Therapy: What It Is

  • "Applied behavioral analysis is an evidence based practice used to change behavior of individuals, in particular those with an autism diagnosis." (CDC) — Nichole Sagar, Nov 2023

  • ABA focuses on the use of reinforcement, manipulation of the environment, assessment of behavior based on the antecedents and consequences surrounding the behavior — Nichole Sagar, Nov 2023

  • The licensing body for ABA therapy is the BACB — Nichole Sagar, Nov 2023

  • All of Everybody has openings 8am-3:30pm, and they also have openings in their social skills group. — Nichole Sagar, Nov 2023

  • LR Consulting Solutions — "Having spent several years full-time in the public school system, Leeann and Rachel realized how much support our community needed outside of school hours. Recognizing the extreme shortage of behavior analytic providers paired with the availability of many behavior analytic companies not matching up with the needs of school aged individuals — LR was born!" — Sara Garber, Oct 2025

ABA Designations

Good vs. Bad ABA

Ethical ABA Practice

Common ABA Criticisms Addressed

  • "You feed M&M's to kids all day" - Edible reinforcers are a last resort. They do not give intrinsic motivation. Question your BCBA if they use edibles too frequently. — Nichole Sagar, Nov 2023

  • "ABA just turns people into robots" - Robotic behavior patterns result from not fading reinforcements and generalizing skills appropriately. Good clinics balance compliance and self advocacy. — Nichole Sagar, Nov 2023

  • "ABA gives kids whatever they want" - First 2 weeks an RBT "pairs" with patient through play. This builds trust for effective therapy. — Nichole Sagar, Nov 2023

Evaluating ABA Providers

Questions to Ask an ABA Company (from Nichole Sagar):

Key Questions to Ask (from Mike Wasmer / CASP):

  • What is the case load of a BCBA in their practice? (CASP stipulates 6-12 cases depending on severity; with BCaBA an additional 0-4) — Mike Wasmer, Mar 2024

  • How are new BCBAs mentored? Are they observed by other BCBAs? — Mike Wasmer, Mar 2024

  • What is the longest tenured BCBA? How long were they a BCBA prior to joining? — Mike Wasmer, Mar 2024

  • What does monthly reporting to the parent look like? — Mike Wasmer, Mar 2024

All of Everybody's Culture

ABA Advocacy & Kate's Law

Early Intervention (Birth-6)

  • Early Intervention services are available from birth to 6 years old. Services for 6+ are governed by the public school system — Mitch Kelly, Feb 2024

  • Only 50% of children for whom early intervention is medically necessary actually qualify for these services — Mitch Kelly, Feb 2024

  • When a family does not qualify they are given a brochure for The Aiden Project — Mitch Kelly, Feb 2024

  • The Aiden project works with clinics like KCDT and Playabilities to provide services for children who do not qualify for Early Intervention — Mitch Kelly, Feb 2024

  • A Night in Their Shoes - November 2023 fundraiser for The Aiden Project. Look for updates for next year's event. — Mitch Kelly, Feb 2024

Resources

Who is KCDT?

Occupational Therapy (School OT)

Notes below are from Becky Meyers, the OT at Ascension Catholic School. Becky has worked in schools across the country in public schools with children from 3 to 21yo. — Becky Meyers, Jan 2025

Medical OT vs School OT: — Becky Meyers, Jan 2025

Medical School
Requires doctor's referral, diagnosis, insurance approval In public school an IEP is required; at ACS Becky can consult with teachers for shorter-term needs
Insurance requires individualized treatment plans Specifically targets classroom needs
Covers skills across all daily living domains Designed to build new function and help access education
Typically for rehab or reinstating function

Skills Targeted by School OT:

What Happens in the School:

  • Teacher or special ed coordinator identifies need

  • OT assesses both the child and the environment

  • OT writes individualized plan with 3 strategies: build motor skills, adapt materials, adapt environment

Practical Tools & Resources:

ADHD Provider Resources

NOTE: Jeremy does not endorse, recommend or support any specific provider, mental health practice or treatment. Below are a sample of the resources available in the area — Jeremy Didier, Sep 2023

Community Groups: — Jeremy Didier, Sep 2023

Psychological Testing: — Jeremy Didier, Sep 2023

Therapy Providers: — Jeremy Didier, Mar 2025

Coaching Providers: — Jeremy Didier, Mar 2025

Occupational Therapy: — Jeremy Didier, Mar 2025

Education: — Jeremy Didier, Sep 2023

Education & Schools

6 topics

EMBRACE

Kim Hammers, Executive Director of EMBRACE. Shared her vision for Embrace in the coming years and answered our questions. — Kim Hammers, Sep 2022

  • EMBRACE (Enriching Many By Reaching All In Catholic Education) is an independent nonprofit that supports students with disabilities and learning differences in Catholic schools across the Archdiocese of Kansas City in Kansas.

  • Financial Grants: Since 2018, they've distributed nearly $2.2 million in grants to 27 Catholic schools, funding special education teachers, board certified behavior analysts, occupational therapists, speech therapists, reading specialists, and enrichment coordinators.

  • Teacher Development: A partnership with Benedictine College offers a Master's in Special Education for teachers already employed in Catholic schools — nearly $500,000 in scholarships has supported 56 teachers as of 2025.

  • Paraprofessional Training: Professional development programs for support staff working with students who have learning differences — 56 paraprofessionals from 20 schools have been trained.

  • Mission: To ensure every child receives a Catholic education suited to their abilities by providing inclusive education support, staffing, and resources to participating schools.

  • 2 annual fundraisers:

    • EMBRACE The Brew is a casual dinner and auction held in October. In 2025 they had close to 500 participants at Fiorella's event space in Overland Park. A Night To Remember
    • EMBRACE The Movies is a held in May at The Boulevard Drive-In Theatre. There are bounce houses, food, entertainment for the kids, and a movie! I have gone every year. Its a great time!

Horizon Academy (Learning Disabilities School)

Horizon Academy empowers students diagnosed with specific learning disabilities to become effective learners and confident self-advocates. — Vicki Asher, May 2025

Overview:

  • Mission: Empowers students with dyslexia and language-based learning disabilities to become effective learners and confident self-advocates. — Vicki Asher, May 2025

  • Vision: Be the premier educational center for students with dyslexia and related conditions and serve as a training resource for the community. — Vicki Asher, May 2025

  • Founded: 1999 by parents dissatisfied with traditional schools' handling of learning disabilities. — Vicki Asher, May 2025

  • Campus: Roeland Park, KS (since 2001) — Vicki Asher, May 2025

  • Type: Independent, non-profit 501(c)(3), receives no state funding — Vicki Asher, May 2025

  • Accredited by: ISACS, AdvancED, Orton-Gillingham Academy (OGA). Member of NAIS. — Vicki Asher, May 2025

Student Profile & Diagnoses:

  • Primary: Dyslexia, Dysgraphia, Dyscalculia; ADHD may be considered — Vicki Asher, May 2025

  • Autism alone is NOT a sufficient learning disability to qualify for admittance — Vicki Asher, May 2025

  • Students have average/above-average cognitive ability with challenges in: reading, spelling, written/oral expression, math skills, handwriting, executive function, social skills — Vicki Asher, May 2025

Instructional Approach:

Programs & Services:

Enrollment & Demographics (2024-25):

Misc:

Lakemary Center (K-12 Special Needs School)

Jean Hoyt, Chief Program Officer for Children's Programs at Lakemary Center. Janet Broll, Chief Operating Officer. — Jean Hoyt & Janet Broll, Jul 2025

Lakemary Center School:

Program Structure:

  • 3 "pods" within 5 classrooms based on student ability: — Jean Hoyt & Janet Broll, Jul 2025
  • "Nova": Students with limited verbal skills — Independent Living Skills, Art Therapy, Music Therapy

  • "Titans": Higher functioning students referred for behavioral concerns — 6-10 kids/class, CODA (Certified Occupational Therapy)

  • Staff trained on safe crisis management including how to safely restrain a student — Jean Hoyt & Janet Broll, Jul 2025

  • Extended school year (ESY) with an IEP — Jean Hoyt & Janet Broll, Jul 2025

Transition:

Additional Children's Services:

Bishop Miege Inclusive High School Program

Bishop Miege High School in Roeland Park — Mallorie Hurlbert is the Learning Resource Director with over 10 years of experience in special education. — Mallorie Hurlbert, Nov 2025

Peer Mentor Model:

  • Juniors and seniors apply, interview, and train with an external entity each year (in the past, EMBRACE and KCDD) — Mallorie Hurlbert, Nov 2025

  • Mentors support full classrooms (not 1:1) — selected for leadership, empathy, and willingness to support peers — Mallorie Hurlbert, Nov 2025

  • 15-25 peer mentors per year; social integration improved by focusing on building student self-confidence rather than manufacturing friendships — Mallorie Hurlbert, Nov 2025

Tiered Classroom Structure:

Electives:

  • Personal Development (confidence/social readiness), Guided Studies (freshman EF skills), Personal Growth (small-group study hall), LRD PG (3:1 pre-teaching/re-teaching) — Mallorie Hurlbert, Nov 2025

Accommodations:

IEP & 504 Advocacy in Catholic Schools

504 Plans → College Transition

Government Benefits, Waivers & Insurance

6 topics

Medicaid & KanCare

  • Carlye Ehman will discuss Autism and Disability waivers. How to get the state to assist in services for your loved one with Autism, Intellectual or Developmental disabilities. Services ranging from therapies, home care, needed equipment, respite and much more. — Carlye Ehman, Jan 2023

  • KanCare Medicaid — Carlye Ehman, Jan 2023

  • To apply for Medicaid. Michael's Note: "Individuals with disabilities and the frail elderly applying for KanCare who believe they may qualify to receive long-term services and supports, Home and Community Based Services (HCBS), make sure you check the box on the application that asks 'Does this person need help with nursing home costs or in-home care?'"

  • Supplemental program with additional benefits

  • Fact sheet — Carlye Ehman, Jan 2023

  • Once on the IDD waiver, your child qualifies for Medicaid individually with no income requirement — Lois Ferguson, Oct 2024

  • Before age 18, family income may affect Medicaid eligibility; after age 18, eligibility may be based on the individual alone — Sarah Otto, Mar 2026

  • Asset limits still matter — accounts in the child's name above $2,000 can affect eligibility — Sarah Otto, Mar 2026

Autism Waiver (Ages 0-5)

IDD Waiver

Lois Bakley Ferguson spoke about the Medicaid IDD Waiver. Why is it important? Who qualifies? How do you apply? — Lois Ferguson, Oct 2024

Why it's called a "Waiver":

  • You are getting approval to waive the requirement that Medicaid would otherwise have to provide services in an institution. We are asking for "Home and Community" based services as defined in the 2014 "Settings Rule." — Lois Ferguson, Oct 2024

Key Points (from CDDO Training Slides (PDF)):

Types of Services (Slide 6 CDDO Training Slides (PDF)):

Required Eligibility:

  • IQ test PRIOR to 18th birthday (federal statute mandate) — Lois Ferguson, Oct 2024

    • Amy Allison noted the school system must provide this before 18 (free) — costs $2,500 after

  • The IDD waiver has a fixed number of spots — Lois Ferguson, Oct 2024

  • Your local DDO helps you get on the state-wide waiting list — Lois Ferguson, Oct 2024

  • If you move counties: register with new DDO but keep your place. If you move out of state: you lose your place. — Lois Ferguson, Oct 2024

When Your Child Turns 18:

Exception/Crisis Definitions (Slides 14-15 CDDO Training Slides (PDF)):

  • Several exceptions allow skipping the waiting list — Lois Ferguson, Oct 2024

  • Key exception: "Persons transitioning from Vocational Rehabilitation Services (VRS) which require ongoing support to maintain employment and self-sufficiency" — Lois Ferguson, Oct 2024

    • If your VR case manager agrees your child "requires ongoing support," after 45 days of VR they can apply for a Crisis Definition exception
    • This is essentially a back door onto the IDD Waiver once your child is 18yo

  • CDDO Contacts: Slide 23 CDDO Training Slides (PDF)

  • Common Acronyms: Slide 24 CDDO Training Slides (PDF)

  • The IDD waiver waiting list is currently approximately 9.5 years (as of March 2026, processing September 2017 applications) — Sarah Otto, Mar 2026

  • Apply for each child separately — if you have two children who qualify, submit two applications — Sarah Otto, Mar 2026

  • Intake requires: birth certificate, Social Security card, IEP (if applicable), medical diagnostics, medication list — Sarah Otto, Mar 2026

  • Waivers do not transfer across state lines — moving to another state means starting over — Sarah Otto, Mar 2026

  • Medicaid does not allow duplication of services — personal care cannot be billed during day services; caregivers cannot bill during paid employment hours — Sarah Otto, Mar 2026

  • Day and residential providers may have their own unofficial internal waiting lists beyond the state waiver waitlist — Sarah Otto, Mar 2026

  • Must get IQ tested by a healthcare provider before applying — an IQ test in the school system IS NOT SUFFICIENT — Sarah Otto, Mar 2026

  • When answering eligibility questions, describe realistic support needs on difficult days, not best-case scenarios — Sarah Otto, Mar 2026

  • Dyslexia, dysgraphia, and other learning disabilities alone are not classified as developmental disabilities under the IDD waiver — Sarah Otto, Mar 2026

  • Intellectual Disability (ID) eligibility: DSM-5 diagnosis by a licensed healthcare professional; substantial functional limitations beginning before age 18; significant sub-average intellectual functioning with deficits in 2+ adaptive skill areas (communication, self-care, safety, etc.) — Sarah Otto, Mar 2026

  • Developmental Disability (DD) eligibility: severe, chronic physical or mental impairment manifesting before age 22; lifelong in nature; substantial functional limitations in 3+ areas of self-care — does not include individuals solely severely emotionally disturbed or with disabilities solely from aging — Sarah Otto, Mar 2026

  • Even with IQ above 70, you may not qualify for Institutional Services but can still qualify for Home and Community Based Services — Sarah Otto, Mar 2026

  • No income consideration for the waiver itself (eligibility is based on need), but there is an income consideration for the Medicaid health application — Sarah Otto, Mar 2026

  • Be aware of "client obligation" or cost-sharing requirements when receiving waiver services — Sarah Otto, Mar 2026

Services available before age 18: TCM, Personal Care, Overnight Respite, Supportive Home Care, Specialized Medical Care, Assistive Services, Children's Residential Supports — Sarah Otto, Mar 2026

Services available after age 18: TCM, Personal Care, Overnight Respite, Supportive Home Care, Specialized Medical Care, Day Supports, Adult Residential Supports, Supported Employment — Sarah Otto, Mar 2026

Targeted Case Management (TCM)

Mental/Behavioral Health & Co-Occurring Disabilities

Appealing Insurance Denials

A couple of our families have been down this road and learned a lot about what to avoid and how to advocate for your loved one effectively during the process. — Michael Lynch, Jun 2023

  • After calling the generic number of your insurer's customer service you will be bounced around until you find someone who can help you. When you find that person: — Michael Lynch, Jun 2023

    • Ask for their name, email address, and extension so you can contact them directly.
    • Send them an email after your call summarizing your takeaways and asking them to correct anything you may have misunderstood
    • Always keep a record of who you talked to, and what was said. You can use this information in your external review to show that you exhausted all options internally first.

  • Remember that insurers, clinics and patients are all responding to incentives. The insurer has set up an arduous internal review process in order to make you give up on your claim. They may deny your claim unlawfully, but until you get through the internal appeal you cannot make your case to the regulator or the courts. — Michael Lynch, Jun 2023

  • Mental Health Parity and Addiction Equity Act (MHPAEA) - No limitation can be placed on medically necessary mental health treatment that are more restrictive than those placed on medical/surgical benefits. This means that the insurer cannot deny a claim for ABA services, for example, on the basis of age, number of hours, setting (read: school setting), or a "lack of progress". — Michael Lynch, Jun 2023

  • If you have a commercial health plan through your employer (group) then your insurance is regulated on a state level. File your complaint in the state in which the insurance was purchased (Check your Insurance Card). File Kansas complaints HERE — Michael Lynch, Jun 2023

  • In your appeal cite MHPAEA, state laws that the denial violates or recent case law that supports your argument. — Michael Lynch, Jun 2023

    • Example: "Sec. 356z.14. Autism spectrum disorders." Section (e) and (e-5) "An insurer may not deny or refuse to provide otherwise covered services under a group or individual policy of accident and health insurance or a managed care plan solely because of the location wherein the clinically appropriate services are provided"
    • Example: Wit v. United - California court rules United Behavioral Health violated Illinois law by using its own guidelines instead of the mandated criteria
    • Example: "Johns v Blue Cross Blue Shield of Michigan, Case No. 08-cv-12272"

  • When arguing medical necessity cite the industry standard care as defined by practitioners, NOT insurers. — Michael Lynch, Jun 2023

    • Example: For ABA and Autism those guidelines are set by CASP

  • When arguing medical necessity cite relevant research in the medical literature. Go to Google Scholar search for something like "ABA in a school setting" and read the abstract of papers until you find one that supports your position. Check the reference sections of those papers and read abstracts of papers that they cite. Pay attention to the citation count, the higher the count the more well known the result. — Michael Lynch, Jun 2023

    • Example: In the Journal of Behavior Modification Eikeseth et al. state: "Our results suggest that the intervention can be successfully adapted to school settings for some children with autism"
    • Eikeseth, S., Smith, T., Jahr, E., & Eldevik, S. (2002). Intensive behavioral treatment at school for 4- to 7-year-old children with autism: A 1-year comparison controlled study. Behavior Modification, 26, 49-68. doi:10.1177/0145445502026001004

  • If your appeal is denied then you get to file an external review with the state. See "ThePlaybook" (attached) for details. — Michael Lynch, Jun 2023

  • When you eventually win, pay it forward by writing your local representatives to the state and federal government thanking them for their support. Succinctly explain the issue you faced with your insurer, and explain how the Mental Health Parity Act, or some state law got your child the care they needed. — Michael Lynch, Jun 2023

Resources:

Legal & Financial Planning

7 topics

Special Needs Trusts

  • Ivailo Grigorov covered SSI & SSDI, Medicaid & Waivers, ABLE accounts, special needs trusts, and other important considerations to help family members better understand how planning for a child with special needs is different both legally & financially. — Ivailo Grigorov, Nov 2022

  • My biggest takeaway was that probate takes 9 months and will cost 1% of your assets. My son's ABA therapy cannot be delayed by a year without setting him back significantly. Also ABA is expensive, so I don't want to put that burden on a family member while they wait for probate. Setting up a special needs trust was a no brainer for my family. We went with Casey's firm. It was a quick process and it only required a couple hours of our time. I would do it again. — Casey Connealy, Feb 2023

  • Separate legal entity funded upon your death per your revocable trust — Assured Trust, Sep 2025

  • Samantha recommends "stand alone" trust bearing the individual's name (easier to administer vs sub-trust) — Assured Trust, Sep 2025

  • Wills trigger probate (6-18 months, costly) — Assured Trust, Sep 2025

  • Types: — Assured Trust, Sep 2025

    • Third-Party SNT: Established by parents/relatives; avoids Medicaid payback; parents control remainder beneficiaries
    • First-Party SNT: Funded with beneficiary's own assets (settlements, GoFundMe); subject to Medicaid payback at death

  • Funding: Life insurance, real estate, farmland, retirement accounts, inheritances — Assured Trust, Sep 2025

  • Kansas follows federal estate thresholds (~$30M for couples); Illinois has ~$1M threshold — plan carefully with multi-state assets — Assured Trust, Sep 2025

  • Medicare 5-year "lookback" — BUT contributions to a special needs trust are NOT included! — Assured Trust, Sep 2025

  • ALL family members (including grandparents) must structure inheritances through SNT to prevent SSI disqualification — Assured Trust, Sep 2025

Trust Companies

ABLE Accounts

Guardianship vs Conservatorship vs POA

Estate Planning Basics & Contact Info

SSA Resources

SSI & SSDI

Transition to Adulthood & Employment

7 topics

Planning for Adulthood

  • Bridget Murphy is a mother to a 32yo son with Down Syndrome. She shared her experience and wisdom about the transition to adulthood. — Bridget Murphy, May 2024

  • At 21yo IDEA services end. Parents typically start planning for adulthood in April of their child's senior year of high school. We need to start planning now. — Bridget Murphy, May 2024

  • Step 1: Develop a "Vision Statement" — goals for your child's adult life: — Bridget Murphy, May 2024

    • Have meaningful employment that adds value to society
    • Live away from home
    • Have a social life

  • Step 2: Develop a "Mission Statement" — plan to achieve the vision. List requirements for each vision statement. — Bridget Murphy, May 2024

    • Example: In order to live away from home our child needs to: Communicate, read, tell time, dress himself, dishes, laundry, housekeeping, transportation.
    • Bridget advocates total openness with the community about your child's disability — it helps the school and community approach your child from understanding, not apprehension. — Bridget Murphy, May 2024

  • Birthday party strategy: Offer to attend birthday parties with your child. Bring the best gift so the classmate wants to invite him back. — Bridget Murphy, May 2024

  • Discipline: Ensure consequences logically follow from the misbehavior. Example: potty training accident → child cleans it up hand-over-hand. — Bridget Murphy, May 2024

  • Don't neglect your typically developing children — apparent favoritism can foster resentment. — Bridget Murphy, May 2024

Finding Employment:

  • There is a middle ground between full employment and a day program — Bridget Murphy, May 2024

  • Let interests guide the decision — Bridget Murphy, May 2024

  • "Own the risk" during the transition — educate the employer, give them strategies, give them an out. "If it doesn't go well after 2 weeks we can part ways, no questions." — Bridget Murphy, May 2024

  • When you own the risk it gives them freedom to learn what you already know: your child will be a HUGE value! — Bridget Murphy, May 2024

Resources:

Timelines and Action Steps (from Sarah Otto): — Sarah Otto, Mar 2026

  • Before age 8: Contact your CDDO to apply for the waiting list

  • Ages 10-15: Begin transition planning; financial planning (ABLE Account, Special Needs Trust)

  • Ages 15-18: Vocational Rehabilitation Pre-ETS; consider Supported Decision Making, POA, or Guardianship; post-secondary education options; obtain state ID

  • Ages 18-19: Apply for SSI/SSDI; apply for Medicaid/KanCare; inquire about adult services; transition medical providers to adult providers

  • Waiting until age 18 or graduation often creates significant stress and missed opportunities — Sarah Otto, Mar 2026

Getting Organized: — Sarah Otto, Mar 2026

  • Keep binders or digital records of diagnoses, evaluations, and all paperwork

  • Separate school records from adult-services records

  • Track communications and deadlines carefully across CDDO, KanCare/Medicaid, Social Security, Vocational Rehabilitation, Transportation, and Medical Diagnostics

  • The system moves slowly and requires consistent follow-up — plan early for major transitions

  • Ask other parents further down the road to share resources and feedback on providers — peer experience is invaluable

Vocational Rehabilitation (VR)

Sheltered Workshops (and why they're going away)

Golden Scoop

The Farmer's House

Amy Allison is the executive director of The Farmer's House. She will share their approach for Early Work Experience, Employment Services, Community Integration and Social Enrichment Programs. Amy served at the Down Syndrome Guild from 2003 to 2021 including as Executive Director and COO. She is now Executive Director of The Farmer's House. — Amy Allison, Jul 2024

About The Farmer's House:

  • Program in Missouri that works with children and adults with IDD to prepare them for the workforce — Amy Allison, Jul 2024

  • Started by 2 sets of parents for their children with IDD — Amy Allison, Jul 2024

  • On a farm everyone has a job and responsibility — that's the philosophy — Amy Allison, Jul 2024

  • Strives to place adults with IDD in the general workforce with meaningful employment where they can contribute, not be "mascots" — Amy Allison, Jul 2024

  • Their "Early Work Experience" program begins in the 6th grade — Amy Allison, Jul 2024

  • They operate a shop in Weston for training and a catering service for parties up to 50 — Amy Allison, Jul 2024

  • Placements include Home Depot, Panera, Montessori Schools, etc. — Amy Allison, Jul 2024

  • They employ a "Benefits Specialist" to help clients keep necessary services — Amy Allison, Jul 2024

Key Resources:

The "Four F's of Disability Employment" to combat:

  • Food (prep and service), Filth (cleaning), Flowers (landscaping), Factories (assembly) — Amy Allison, Jul 2024

  • Build relationships NOW with companies in fields your child shows interest — Amy Allison, Jul 2024

How to Prepare Your Child:

Programs in Kansas & Johnson County:

Autism Resource Center of Kansas City

Jay Cross founded Autism Resource Center of Kansas City (ARCKC) in his son's honor. Program for autistic adults 18+ focusing on prevocational training, social skills, and health & wellness. — Jay Cross, Aug 2025

Overview:

Funding History:

  • Initially worked with Down Syndrome Innovations (DSI) — Jay Cross, Aug 2025

  • Then Church of the Resurrection (95th and Antioch) offered a Mon/Wed program — Jay Cross, Aug 2025

  • Now privately financed; Jay working to diversify funding — Jay Cross, Aug 2025

  • Currently in application process to become approved Pre-Vocational program with Kansas Medicaid — Jay Cross, Aug 2025

Program Details:

Post-Secondary Education (Benedictine Cupertino)

Mike and Terri Kern started the St. Joseph Cupertino Program at Benedictine College for young adults with intellectual and developmental disabilities. — Mike & Terri Kern, Aug 2024

Program Details:

Peer Mentor Model:

Other Support:

How to Apply:

Why Consider It:

JCCC Supported Education Programs:

Homeschooling & Private School Access:

  • Homeschooled students can still access related services (speech, OT, PT) through their local public school district under IDEA — Sarah Otto, Mar 2026

  • Students at private/Catholic high schools who maintain an IEP should be considered for 18-21 transition programs, though specifics vary by district — Sarah Otto, Mar 2026

  • Consider enrolling in the public district for at least the last semester of senior year to strengthen access to post-secondary transition programs — Sarah Otto, Mar 2026

Recreation, Community & Family Life

7 topics

SOAR Special Needs

Sensory-Friendly Activities (KU Aquatics)

About the Speakers:

SEA Program:

Schedule (Summer 2025):

Ongoing Study:

Broader Mission:

Swimming Advice:

Family Camps & Faith Programs

Safety Resources

Blue Envelope Program:

  • Voluntary self-disclosure program available through every police department in Johnson County — Sarah Otto, Mar 2026

  • Put important documents in a blue envelope — keep in the car, backpack, or with the individual — Sarah Otto, Mar 2026

  • In a crisis the person hands the envelope to the officer — it tells the officer step-by-step what to do — Sarah Otto, Mar 2026

Take Me Home Program:

  • Johnson County Sheriff's Department program — voluntary registration for individuals who may need assistance getting home — Sarah Otto, Mar 2026

Transportation

SNAP Food Assistance

Finding Babysitters

Carlye Ehman and Mary Kate Hamilton discuss how to find a babysitter you trust with your special needs children. — Carlye Ehman & Mary Kate Hamilton, May 2023

Know a resource we should add?

Send us a note and we'll review it for the next update.

“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.”

— Psalm 139:13–14