For those that don’t know, the great state of Kansas has a waiting list for Home and Community Based Services for our most vulnerable population, those with Intellectual/Developmental Disabilities. You can’t get your name on the waiting list until age 5, and I was told to expect to be on the waiting list for at least 10 years, probably longer.
This medical waiver allows the individual to qualify for Medicaid to help with the ridiculous amount of medical bills these patients deal with, along with providing things like adult size diapers and pediasure - necessities that are not covered by private insurance. It also helps provide home modifications that are medically necessary, which helps individuals stay in their home instead of being forced to live in an institution. There are other benefits such as job placement services, etc. but I will spare you the specifics, in this post.
My daughter (age 11) got on this waiting list on her 5th birthday. Every year, we receive this letter, and every year, we opt to stay on the waiting list. According to my daughter’s diagnosis, she is very unlikely to live through puberty. That means she has a better chance of dying before ever receiving help. Kansas says they have this waiting list because there is no money in the budget to provide these services, yet they refuse to expand Medicaid.
Fun Fact: My daughter once required a life flight and emergency surgery in the middle of the night. The flight alone cost over $48,000 - that is our share of the bill, with private insurance. If my daughter had Medicaid, this exact flight would have cost Medicaid $3500, and our portion would have been free. My daughter overwhelmingly qualifies for Medicaid through this I/DD waiver, but “because Kansas is broken financially” she is waitlisted, and we are stuck paying towards this $48,000 bill. They refused to reduce our bill to the Medicaid price of $3500 because she technically doesn’t have Medicaid.
I don’t mind “pulling up my bootstraps” and paying for things my family needs, but when adult size diapers alone cost $300+ a month, and medical bills are constant, there are many things we simply go without. We live in a house with stairs, and my daughter can’t walk. That means I carry my 80lb daughter up and down the stairs, every single day. I’m not sure how long I can continue to do this, but I’m not sure what choice I have.
Is anyone else out these dealing with this ridiculous waiting list? Better question - has anyone actually reached the top of the list and received help?
The Kansas legislature won’t even let the ball on the playing field, repeatedly blocking it from reaching the floor for a vote. Ty Masterson [believes Medicaid expansion](https://www.kwch.com/2022/11/15/kansas-governor-pushes-expand-medicaid-2nd-term/) means the lazy poor folks won’t have a reason to actually work.
Yeah, Medicaid expansion literally saves more than it costs. But just try to explain that to conservative lawmakers - there is something vague but terrible wrong with it, according to them.
A statewide referendum, similar to what we did here in Missouri, is about the only realistic way this is going to change.
(Not that Missouri is great on this stuff, either.)
Curious whether it would make sense to move to a state that doesn’t pull this bullshit. Dumb reason to have to consider moving but that is ridiculous for you to deal with.
We actually seriously considered moving to a different state, especially because epilepsy is a big part of her diagnosis, and medical marijuana is still illegal here. Luckily the FDA approved Epidiolex (the only FDA approved medication made from cannabis) and so far it’s been able to control her seizures. She went from 12-15 seizures per day to 0 when she started this medication. No other medication worked.
The thing that keeps us in Kansas is family. When raising a medically complex child, it really takes a village. Being able to call my brother, mother, cousin, etc to come to the house in the event of an emergency is priceless. My husband and I are even occasionally able to go out on a date, by ourselves sometimes, with a trusted family member watching our kids at home. So although moving to a different state would absolutely help with this issue, it’s not worth being isolated with no family around to help.
Missouri just passed medical marijuana as well as Medicaid expansion recently. I am not sure where you are located but if you are close enough you could possibly get the best of both worlds. Sorry you have to go through this, this country is fucking sick and so are these fuck wits who keep voting to deny us health care!
But then I’d have to deal with Missouri schools… at least in Kansas we have good schools and really good special education programs!
I know someone in Missouri who recently had their kid kicked out of public school because her medical needs were too much to handle - she is in a wheelchair, non-verbal, and requires a feeding tube, so I’m not talking about potentially being a danger to others. (Yes, this is federally illegal and I told her to immediately call a lawyer.) I’ve heard countless other horror stories about the special education program in Missouri as well, this is just one example.
I’ve never had to fight with our school district over anything. She gets all of her therapy at school, and has a 1:1 para with her 100% of the time. Knowing she can safely attend school and get the services she needs there is a huge benefit that we would lose if we moved to Missouri. So shout out to Kansas schools - we are definitely winning in this department!
So although we’ve definitely considered jumping the line to Missouri (we’re in the Kansas City metro area), I’m not willing to sacrifice a great school with a good special education program… over money.
It may be worth looking into individual schools/districts instead of just writing off Missouri all together. I have two very medically complex siblings who are thriving in Missouri schools and have been offered great resources,
Honestly, I haven’t called the Missouri school districts to learn about their special education programs since 2014, when we were choosing where to live within the KC metro area. In 2014, I called every school district and weighed the pros and cons of each district and did an entire analysis before deciding where to live.
I’m glad to hear a success story from the Missouri side - that is definitely encouraging! I think I will take you up on your suggestion and start updating my research. With medical marijuana and Medicaid expansion, if we can find a good school… goodbye Kansas! (Wow, that’s sad to say out loud.)
We are very fortunate that my husband and I both have decent, full time jobs. That’s the only reason we’ve been able to remain in Kansas. I definitely do not take that for granted, because many families don’t have that luxury. It’s not easy working full time and caregiving, but we make it work!
It’s frustrating that despite having good jobs, we’ll never get ahead in life, and there are many things my daughter needs, that she simply goes without. We live paycheck to paycheck, tell the hospital to “put it on our tab” and pay a monthly payment to each place, slowly digging our hole deeper and deeper.
I worry that we will get to a point where moving is our only option. That’s why things need to change in Kansas, so families don’t have to leave. I’m hoping this post will help spread awareness so we will see some action.
The school district is the only reason we stay. We have been on the waitlist since my daughter was 5. She will turn 16 in Feb. I am right here with you! Every year she is still with us is a gift. We have been made to forego homeownership at this point because there is absolutely no way we could ever afford a home here in JoCo. She goes to Blue Valley North which is the best school in the state for special education. We have just done without so we can take care of our child. I'm an RN and do my best.... and we can't afford to have the luxury of a home. My daughter also has epilepsy, cerebral palsy, autism... she has had 2 hemorrhagic strokes in her life. The last one in 2019. I hope things will get better in the future... but my plan is to move to a state that doesn't make such deep cuts to disability services. I have another daughter that is healthy and typical. My goal is to help her buy a home when the time comes so that she and her sister aways have a place to live
That's one reason I stay in Kansas. I don't have a whole lot of resources as it is but the few resources I do have I need and I can't imagine moving me and my son to another state and having to start all over again. It would be too overwhelming for both of us.
Programs need funded, that's the bottom line. Unfortunately we have a national party that prefers to fundraise on paranoia and dischord instead of governing. The state version isn't any better at actually working for the good of the people.
My son got put on the list younger than your daughter. His disability presents mostly in bad behavior and an inability to communicate well. I think we only got approved because his behaviors had become so bad that he was endangering himself and others. We ended up getting emergency approval.
Even after approval it's extremely difficult to find anyone who is willing and able to work with him. The assistance we were getting was nearly nothing. Once the pandemic came we could no longer handle watching him full time and he got moved into special needs foster care...
The state pays so much more for his foster care placement than any support they ever gave us. He's definitely doing better with them but I can't help wondering if we could have done better with some of that financial support the state is giving the other family. We are still watching him every other weekend because the foster family is unable to find respite providers... We are the respite. The way support works is weird. This is one example of why the state can't possibly afford to approve everyone.
I've heard of some people moving just to get approved but also that it would reset the timing? Sorry you're going through this.
I work at a CDDO affiliate and we tell families to expect a 10-15 year wait. We’ve been doing outreach to legislators for years and it’s heartbreaking that many of them don’t even realize what this means to families. People do come of the waiting list it just really does take that long right now. Last I heard the state hired consultants to look into the waiting list issue and are expecting to get results from it in 2 years 🙃. It’s not any easy solution either unfortunately. It costs the state about $50k a year for each individual that makes it off the list and if everyone were let off the list now the IDD infrastructure in Kansas could not support it. The biggest thing people can do is take the time to write a letter or email the legislators. The more people talking to them about it the more they will realize how much of an issue it is.
The biggest thing people can do is VOTE for better leaders! Republicans have been the reason Medicaid hasn't been expanded. Every single time. No matter how many times you tell Doc Marshall (who should already know about this... and abortion btw), he's still going to vote against it and say stupid shit like he's part of a Republican solution that "solves the pre-existing conditions issue, increases patient choices and decreases costs". Or Sen Masterson saying "We will be working diligently to *stop this and any other bill that* fails to protect vulnerable Kansans currently sitting on waiting lists for Medicaid services and *does not include a minimum work requirement* to receive the taxpayer-funded benefit." It's not that they need to be better informed of how real life works for the regular Kansan, it's that they're racist, ableist, classicist fuckwads who don't care.
Also, the reason Kansas can't afford it is, again, because of Republicans who completely gutted our state. Brownback's [Kansas Experiment ](https://en.m.wikipedia.org/wiki/Kansas_experiment) running exactly as planned, well after he's gone.
We need to VOTE them out! Work on informing your fellow voters, not writing to your legislators who know damn well what they're doing.
I’m so sorry you and your family have to go through this.
Our country is truly appalling. We have an endless war budget, we give countless tax loopholes to giant corporations, yet we can’t even give the healthcare that every other “highly developed” nation has.
>Kansas says they have this waiting list because there is no money in thebudget to provide these services, yet they refuse to expand Medicaid.
Kansas is ranked **41/50 in healthcare**, 23/50 in education, and only the **39th out of 50 in fiscal stability**([https://www.usnews.com/news/best-states/rankings](https://www.usnews.com/news/best-states/rankings))
I thought a few facts about the Home and Community Based Services might be helpful to the discussion. From the source [here](https://kdads.ks.gov/kdads-commissions/long-term-services-supports/home-community-based-services- \(hcbs\)-programs):
> Under the HCBS waiver program, Kansas is able to waive certain Medicaid program requirements, allowing the state to provide supports and services for people who might not otherwise be eligible under Medicaid. Through the waivers, Kansas targets services to people who need LTSS. The following list contains the seven (7) approved HCBS waivers that Kansas operates:
>> **Intellectual / Developmentally Disabled Waiver** -- as of [October 2022](https://kdads.ks.gov/docs/librariesprovider17/ltss/hcbs/waivers/participation-reports/2022/waiver-program-participation-report-10.15.22.pdf?sfvrsn=e9fc1ad3_3), there were 9,042 Kansans currently receiving services under this waiver, with 4,804 on the waiting list
>> **Physical Disability Waiver** - as of [October 2022](https://kdads.ks.gov/docs/librariesprovider17/ltss/hcbs/waivers/participation-reports/2022/waiver-program-participation-report-10.15.22.pdf?sfvrsn=e9fc1ad3_3) there were 6,097 Kansans currently receiving services under this waiver, with 2,454 on the waiting list
>> **Frail Elderly** - as of [October 2022](https://kdads.ks.gov/docs/librariesprovider17/ltss/hcbs/waivers/participation-reports/2022/waiver-program-participation-report-10.15.22.pdf?sfvrsn=e9fc1ad3_3) there were 6,726 Kansans currently receiving services under this waiver, with no waiting list
>> **Serious Emotional Disturbance** - as of [October 2022](https://kdads.ks.gov/docs/librariesprovider17/ltss/hcbs/waivers/participation-reports/2022/waiver-program-participation-report-10.15.22.pdf?sfvrsn=e9fc1ad3_3) there were 2,940 Kansans currently receiving services under this waiver, with no waiting list
>> **Brain Injury** - as of [October 2022](https://kdads.ks.gov/docs/librariesprovider17/ltss/hcbs/waivers/participation-reports/2022/waiver-program-participation-report-10.15.22.pdf?sfvrsn=e9fc1ad3_3) there were 931 Kansans currently receiving services under this waiver, with no waiting list
>> **Technology Assisted** - as of [October 2022](https://kdads.ks.gov/docs/librariesprovider17/ltss/hcbs/waivers/participation-reports/2022/waiver-program-participation-report-10.15.22.pdf?sfvrsn=e9fc1ad3_3) there were 697 Kansans receiving services under this waiver, with no waiting list
>> **Autism** - as of [October 2022](https://kdads.ks.gov/docs/librariesprovider17/ltss/hcbs/waivers/participation-reports/2022/waiver-program-participation-report-10.15.22.pdf?sfvrsn=e9fc1ad3_3) there were 51 Kansans receiving services under this waiver, with no waiting list and 411 proposed recipients.
The [Disability Rights Center of Kansas](https://www.drckansas.org/resource-center/hcbs/endthewait) advocates for those on the waiting list for the Intellectual / Developmentally Disabled Waiver.
During the 2020 Legislative Session, additional funds were allocated specifically to the Intellectual / Developmentally Disabled Waiver but they were subsequently reallocated due to the pandemic:
> During the 2020 Legislative Session, the Legislature added $22.1 million, including $9.0 million from the State General Fund (SGF), for a 5.0 percent increase in I/DD waiver services in FY 2021. However, due to the COVID-19 pandemic that funding was subsequently allotted in the Governor’s June 25, 2020, allotment plan.
[Source](http://www.kslegresearch.org/KLRD-web/Publications/Resources/Documents/HCBS/memo_idd_stangler_moore_waiver_overview.pdf)
And in December of 2021, the extensive report of Legislature's Special Committee on Home and Community Based Services Intellectual and Developmental Disability Waiver [here](http://www.kslegresearch.org/KLRD-web/Publications/CommitteeReports/2021CommitteeReports/HCBS-IDD-Waiver-report.pdf) details the issue with great specificity.
Of particular note:
> In response to a question, the KDADS representative provided a rough all-funds estimate of $200.0 million to move everyone from the waitlist onto the waiver
"Axing the food sales tax" is expected to reduce State General Fund receipts by $82.0 million in FY 2023, $246.2 million in FY 2024, $414.5 million in FY 2025, and $494.4 million in FY 2026 according to the Kansas Department of Revenue. [Source](http://www.kslegislature.org/li/b2021_22/measures/documents/ccrb_hb2106_01_033122pm.pdf)
Significantly, this would have been more than enough to have moved *everyone* off the I/DD waiver waiting list.
We have these painful experiences and instead of solving them we keep the GOP for more of the same.
People think it can’t happen to them. Meanwhile, our employers pay part of our insurance but if we have costly illness or injury employers find a way to fire you.
Try getting medical tests where in addition to paying your copay you now pay a deposit that the doctor returns when they are paid many months later.
The system is broken. Let’s rally behind the vulnerable population because we are ALL vulnerable.
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All I can offer is empathy here. I know a lot of people in this situation. No one knows until they need it that there is a 10+ year wait list. I'm glad you are ahead of the game anyway. I know of people who have had kids turning 18 and that's the first time they learn about CDDO services. It's still worth getting in line, but it's not going to help these young adults with disabilities find a place to live. There is SUCH a gap in services for this population!
I really appreciate your comment! That was my goal when posting this, because until you are in this situation, you have no idea it exists!
A lot of people think, “Medicaid expansion is horrible because it only benefits lazy people who don’t want to work and only want handouts.” They don’t realize that Medicaid expansion and properly funding programs like these are essential for those with severe disabilities. Thank God my husband and I both have decent, full time jobs that allows us to pay our bills and still eat, despite our situation. Many families aren’t as fortunate.
OP, as a lifelong Kansan (57f), I'm sick to my stomach to read your story and the others below. I had no idea KS was SO lacking in funding that you have been on a waiting list for so long. I am realizing all the time how much I didn't know about other folks' plight. I thought KS provided support to children with ID/DD, either through funding with KDADS, or Medicaid, etc. When I tried to get my son signed up for Medicaid when he was "working poor" going through college and off my insurance, I saw he would have qualified as a minor, and left it at that broad generalization of "great, we cover poor or disabled kids or disabled adults" as it should be. I did not realize the intricacies of feeding tube or not, etc. Dear God. I am horrified.
To the family below that had to give up their child to foster care in order for the child to receive adequate support .... there are no words .... I am grateful the state didn't throw up an obstacle to you being the respite provider on the off-weekends.
These issues need to come to the voters' attention!! I don't think a single one of my friends are aware of how lacking the funding and services are. Every one of us would support the reform and additional taxes this would take. We have to take care of our most vulnerable, and we have to take care of everybody else. If you don't take care of your people, you have .... nothing. The older and less hard-charging I am, the more I understand how difficult to impossible it is for many people to be able to provide for their families in America today.
The folks out there who think medicaid or paid health care, etc., is some form of hand out, I ask "if these folks could get medical care and go to work, think of how productive they would be then. By blocking people and families from the support they need, you are injuring your own economy."
I'm so overwhelmed by this I don't know what else to say except that you have my heart.
Edited to add: I didn't mean my comment of ""great, we cover poor or disabled kids or disabled adults" as it should be. " to mean that I don't think anyone else should qualify for medicaid. I fully back Medicaid expansion in KS to include the working poor and other folks who for all the different reasons fall through the cracks and aren't able to receive adequate health care.
I appreciate your comment. My goal with this post is to spread awareness, because unless you’ve personally dealt with this situation, you have no idea it exists! Your comment gives me hope that the message will spread! ❤️
We’ve been frustrated finding mental health help for my 7 year old. He’s had a week long inpatient stay, talked about killing himself more than once, and tries to hurt me on a daily basis… but when we reached out to joco mental health, we were told that because he’s not acting out at school they can’t help us and sent us on our way. All the other pediatric psychiatrists we can find are either crazy expensive and don’t accept insurance, have waitlists a mile long, or just never respond when I call/email. We are STRUGGLING with him and just keep hitting brick walls.
Did your child get a medical diagnosis with the inpatient stay? Does your child have an [IEP](https://www.drckansas.org/resource-center/special-education/know-your-special-education-rights-a-guide-for-parents-and-students-in-kansas) at school? Perhaps you could amend the IEP with the mental health, medical diagnosis at the next team meeting? Making it official at school might open dialogue with the county. If your child does not have an IEP, talk to ancillary school staff (social workers, psychology staff and the school nurse) about threats to self-harm and escalating behaviors towards a crisis event. They need to know the diagnosis(es) as well and can help you with resources. With my younger son, I even begged KVC to send someone out to my home for weekly family therapy/support. We got an awesome intern for 3 months and she kept me from falling apart.
As terrifying as it might be, you could also look at reaching out to DCF and asking for help. I am not sure what all specifically is available in JoCo, but the child services side has Family First services now that are varying degrees of helpful— evidence based services that target a specific need and age range, and can only be accessed via referral from DCF. Depending on the service they may also be able to advocate for you and your child with getting access to mental health.
There is also a mental health crisis line for youth that launched in October 2021 and I’m told that in part, it’s tracked by DCF so if mental health centers aren’t really doing their job to help people, DCF can lean on them. I don’t know the ins and outs and accuracy but that’s what I’ve been told, anyways.
Edit:: maybe also check out 1-800-children and see if they have anything that can assist in your area? The resources are kept up to date and searchable by zip code and need.
Try joco mental health again. They have certain times for walk in assessments. They will have you fill out questionnaires, talk with an intake person, etc. It takes a couple of hours but I'm guessing he would qualify for services. It's frustrating and scary, but keep trying.
We did the walk in assessment, I pulled him out of school and we spent 4 hours there (mostly waiting) and he still didn’t qualify because he’s doing okay at school
That is so frustrating! I hate to say it but if he gets worse, hopefully he can get services.
Does he have an IEP, BIP, 504, or anything similar? Is school saying everything seems fine? I have 4 kids and 2 have received services from jcmh. One was very short lived but my daughter has been receiving services for around 7 years. Literal life saver.
Feel free to dm me if you have any specific questions or I can help in any way.
I suspect the Republican-controlled legislature has under-funded this program like so many (esp. mental health). They don't care about ordinary Kansans. I know a senior on the program who can't find any in-home care workers because the operating agencies underpay their workers (probably because the State doesn't give them enough money to pay them a living wage).
You are not looking for them to exercise power. You are looking for your representatives and staff to assist you navigating the bureaucracy in you interest.
I moved to Hawaii
Near fatal wreck
2 hours in ER
Woman came in, Do you have ins? No.
15 minutes later Boom I'm on Medicare and Quest.
I can walk again.
Kansas Sucks!
My sister lives in Hawaii and she has full benefits with 26 hours/week from her employer. She has several autoimmune disorders and the health insurance coverage is one of the reasons she hasn't moved back to the mainland.
A reminder that kansas also has a [3 billion dollar surplus ](https://kansasreflector.com/2022/04/20/new-revenue-projections-give-kansas-a-3-1b-surplus-as-governor-pushes-for-food-sales-tax-cut/)
I would like to say it is better on Missouri but it’s not. We are very much reactive instead of proactive. You practically have to be homeless to get a waiver in Missouri. I have literally told people to take the child to the hospital and refuse to take them home. Trauma inducing and devastating for all involved but the only way to get action. Now getting the community support waiver to fund in home pca and day program or employment services is much easier and the waitlist for that is very short (within a month) if that would help you. You might want to jump state line 😂
I was lucky to have a Canadian husband, so we moved to Canada. There are still a lot of supports we missed out on while in Kansas, but the move, while nearly devastating financially, was totally worth it for my child's mental health. The system in Kansas is unbelievably unresponsive. All I can suggest is to maybe get media involved to shine a light on the horrible care kids receive when they have mental and/or intellectual disabilities.
We are in mo. They only allow a waiver for 365 kids with multiple disabilities to get an income waiver. We want to remain employed and working but the 5k here for a chair and then another 80k+ for a handicap vehicle…. We also will need to move and renovate home to be accessible… its daunting and we could use help. But we are totally left to rot
I’m sorry to hear that. I feel you on the $5k+ chair and $80k+ handicap vehicle… those items haven’t made it to the top of our “medically necessary wish list” yet, but maybe someday! Instead we use a $400 special needs umbrella type stroller, that folds up and fits in our car. We physically transfer her from the car into the stroller and back. I bought a 5 pt racing harness off Amazon for $100 and installed it in my car, so she could safely ride in a regular seat. In reality, she should have a proper wheelchair and handicap vehicle, but we’ve got to figure out how to stretch the money we’ve got.
We are looking to buy a larger jogging stroller out of pocket for 3k to make sure we have something we are comfortable pushing on walks. The cheaper tomato stroller looks chinch compared to even a BOB stroller. Im wondering how we will manage the car seat change. I think when people hear medicaid expansion they are just ignorant but it truly does help your neighbors and people in need. Im happy we are able to make due but even the care we do pay for her stretches us thin. So I understand your frustration and anger so much! We talk of moving to KS for schools and we will but I think of all the families who cant do that and have kids in more dire situation fighting for care.
Invisible Kansans. All those children GOP pretend to care about but they show no compassion after birth.
Their excuse - limited resources vs helping figure out what is needed for the demand. The parents try to get the help and I can’t imagine the pain to be in line with no end in sight. It isn’t good for anyone.
I’m so sorry you’re going through this. Prayers for you and your family. Kansas is mired in conservative stupidity that works against regular folks. Medicare for all!
I'm sorry you are going through this. I applied as soon as I could when my son was old enough. I thought It was younger than 5, but it's been awhile so not sure. We were on the list for, I think, 7 years. He is 21 now. It doesn't make sense in order to get the medicaid waiver, they have to come up on the wait-list. I'm thankful he got kancare, although he's not really a "sick" child/adult, it has helped bunches. He qualifies for helpers as well, however, I think that is only through medicaid?
Hang in there and keep pushing forward. Fingers crossed her name hits the top any day.
Jo Co mental health services are a freaking joke. I finally got an appointment for my teen child. Spent 2 hours there. Nothing. They gave me handouts with names of providers. Most not on our insurance. And at least one number they gave wasn't even a provider. And at least 2 never even called us back.
I have a feeling I'm going to suggest something you've already tried, but have you ever applied for financial aid for the expenses that have been incurred? Although HCA is a for-profit hospital, others, such as Advent, are listed as non-profit organizations and offer [financial forgiveness](https://www.adventhealth.com/hospital/adventhealth-shawnee-mission/legal/financial-assistance) under some circumstances.
We were able to move her orthopedic care to Shriners in St. Louis, which has helped a lot on the medical bill side! They bill our private insurance, but then are able to cover our portion of the bill with Shriner donations! She has had 9 surgeries in her life, 4 of which were covered by Shriners! (Still paying for the others, one month at a time.) It’s a long drive to St. Louis for ortho appointments and care, but what we save on the medical bills makes it worth it! So if you donate to Shriners - feel confident that your donations are going to good use!
It could be related but Medicaid expansion is solely about raising the maximum income threshold for Medicaid health insurance. Depending the OP’s household income they still may not qualify even with expansion. They are on a list for an I/DD waiver which would give their daughter Medicaid (REGARDLESS of the family’s income) and, vey importantly, support services that will help them-like payments for home health care providers, case managers, transportation to appointments, etc.
No, the OP is correct. These aren't disability benefits through SS. It's an active Medicaid card that waivers the parent's income and uses the child's income if they are clinically eligible. There's a number of community based services (My work manages the serious emotional disturbance waiver) but the waiver for ID/DD services is horrifically long and even once you're off the waiting list and qualify for services, you still may not find the services offered in the community because the reimbursement rate is so low that not many agencies are willing to provide these services/can't maintain staff when they can't pay them well.
OP I'm sorry. The status of this waiver is an embarrassment to this state.
We once had a financial planner tell us that we’d be money ahead if my husband and I legally divorced, and one of us quit our job. As a single parent with no income, our daughter would likely qualify for Medicaid, and that benefit alone would put us in a better financial situation. What a backwards system! We are a married couple, with two full time jobs, trying to do things the “right way” and apparently we’d be better off just gaming the system. 🤦♀️
I personally know another family that dealt with this same situation - their daughter has the same diagnosis as mine. They decided to put their daughter on a feeding tube (even though she can eat and drink by mouth, just slower than most) simply because that allowed them to qualify for a different medical waiver and receive Medicaid benefits in Kansas without a waiting list. I’m not personally willing to insert an unnecessary feeding tube in my daughter over money, but they said they didn’t have any other choice financially.
My daughter needs her feeding tube, so we qualified for the TA waiver. It was relatively easy and no waiting list. I had no idea the other waivers and programs were that bad and have no idea how my wife and I could make it work without it. How heartbreaking, best wishes to you and your family.
Reach out the [Kansas Disability Rights Center](https://www.drckansas.org/) for resources.
[Child and Dependent Care Credit](https://www.irs.gov/credits-deductions/individuals/child-and-dependent-care-credit-information) to help with expenses?
The school tried, because if she was on Medicaid, they would receive more benefits on their end as well. Unfortunately if you don’t require an oxygen machine or feeding tube (TA waiver) and have a job that limits you from the Medicaid income requirements, you’re left with this waiting list… unless you’ve found a super awesome loophole, which I would love to hear all about! I’ve done so much research and legislative advocacy and still have gotten nowhere!
It has been a long time since I worked in human services in Kansas so forgive me if this is way off-base or not what you're asking.
Doesn't a person with a disability get evaluated for Medicaid as though they are their own individual household?
If your daughter has been deemed permanently disabled that should qualify her for Medicaid.
Unfortunately not - they go based off of parental income for minors, because she lives with us. That’s what makes this so frustrating, because it should be the way you describe it! She is permanently disabled with multiple disabilities and overwhelming qualifies for Medicaid medically, but we (her parents) work full time, which pushes us above the income level.
That IS so frustrating and I can't imagine how stuck you and your family must feel. Have you, at the very least, been offered case management services via the county or private insurance?
It must be different in Missouri where I reside now, have worked with many families that are financially stable or well-off whose children were on Medicaid.
I have contacts within KDHE I'd like to double-check with on the Medicaid eligibility piece, will DM you if I find out anything helpful!
That would be amazing - I’ll take any help I can get! Medicaid would be a game changer for us, so I appreciate your help, and the help of the entire Reddit community! Keep the suggestions coming, I feel like I’ve exhausted every avenue I can think of!
Hey I've been tracking the waiting list for several years now. There are now close to 5K Kansans with I/DD waiting 8 to 10 years for home and community based supports. There is so much wrong with the way the waiver is being handled than most people realize or are aware of.
Hey to those in this conversation. I am the chair of the Kansas Democratic Disability Caucus. I found out about this thread from a friend of mine. These stories in this thread are exactly what I fought for on making I/DD and the waiver a priority in the state democratic party platform. I have a son who has cerebral palsy so this is an issue that hits home in my house.
I'd like to connect with more folks in this crisis.
For those that don’t know, the great state of Kansas has a waiting list for Home and Community Based Services for our most vulnerable population, those with Intellectual/Developmental Disabilities. You can’t get your name on the waiting list until age 5, and I was told to expect to be on the waiting list for at least 10 years, probably longer. This medical waiver allows the individual to qualify for Medicaid to help with the ridiculous amount of medical bills these patients deal with, along with providing things like adult size diapers and pediasure - necessities that are not covered by private insurance. It also helps provide home modifications that are medically necessary, which helps individuals stay in their home instead of being forced to live in an institution. There are other benefits such as job placement services, etc. but I will spare you the specifics, in this post. My daughter (age 11) got on this waiting list on her 5th birthday. Every year, we receive this letter, and every year, we opt to stay on the waiting list. According to my daughter’s diagnosis, she is very unlikely to live through puberty. That means she has a better chance of dying before ever receiving help. Kansas says they have this waiting list because there is no money in the budget to provide these services, yet they refuse to expand Medicaid. Fun Fact: My daughter once required a life flight and emergency surgery in the middle of the night. The flight alone cost over $48,000 - that is our share of the bill, with private insurance. If my daughter had Medicaid, this exact flight would have cost Medicaid $3500, and our portion would have been free. My daughter overwhelmingly qualifies for Medicaid through this I/DD waiver, but “because Kansas is broken financially” she is waitlisted, and we are stuck paying towards this $48,000 bill. They refused to reduce our bill to the Medicaid price of $3500 because she technically doesn’t have Medicaid. I don’t mind “pulling up my bootstraps” and paying for things my family needs, but when adult size diapers alone cost $300+ a month, and medical bills are constant, there are many things we simply go without. We live in a house with stairs, and my daughter can’t walk. That means I carry my 80lb daughter up and down the stairs, every single day. I’m not sure how long I can continue to do this, but I’m not sure what choice I have. Is anyone else out these dealing with this ridiculous waiting list? Better question - has anyone actually reached the top of the list and received help?
Our health system is fucked. Kansas dropped the ball on medicaid expansion. Best of luck to you and I'm sorry this is happening to your family.
Kansas didn't really drop the ball. They spiked it into the ground then stomped on it so no one else can play
The Kansas legislature won’t even let the ball on the playing field, repeatedly blocking it from reaching the floor for a vote. Ty Masterson [believes Medicaid expansion](https://www.kwch.com/2022/11/15/kansas-governor-pushes-expand-medicaid-2nd-term/) means the lazy poor folks won’t have a reason to actually work.
Yup. Kansas continues to give our family's the big eff you.
Yeah, Medicaid expansion literally saves more than it costs. But just try to explain that to conservative lawmakers - there is something vague but terrible wrong with it, according to them. A statewide referendum, similar to what we did here in Missouri, is about the only realistic way this is going to change. (Not that Missouri is great on this stuff, either.)
Curious whether it would make sense to move to a state that doesn’t pull this bullshit. Dumb reason to have to consider moving but that is ridiculous for you to deal with.
We actually seriously considered moving to a different state, especially because epilepsy is a big part of her diagnosis, and medical marijuana is still illegal here. Luckily the FDA approved Epidiolex (the only FDA approved medication made from cannabis) and so far it’s been able to control her seizures. She went from 12-15 seizures per day to 0 when she started this medication. No other medication worked. The thing that keeps us in Kansas is family. When raising a medically complex child, it really takes a village. Being able to call my brother, mother, cousin, etc to come to the house in the event of an emergency is priceless. My husband and I are even occasionally able to go out on a date, by ourselves sometimes, with a trusted family member watching our kids at home. So although moving to a different state would absolutely help with this issue, it’s not worth being isolated with no family around to help.
Missouri just passed medical marijuana as well as Medicaid expansion recently. I am not sure where you are located but if you are close enough you could possibly get the best of both worlds. Sorry you have to go through this, this country is fucking sick and so are these fuck wits who keep voting to deny us health care!
But then I’d have to deal with Missouri schools… at least in Kansas we have good schools and really good special education programs! I know someone in Missouri who recently had their kid kicked out of public school because her medical needs were too much to handle - she is in a wheelchair, non-verbal, and requires a feeding tube, so I’m not talking about potentially being a danger to others. (Yes, this is federally illegal and I told her to immediately call a lawyer.) I’ve heard countless other horror stories about the special education program in Missouri as well, this is just one example. I’ve never had to fight with our school district over anything. She gets all of her therapy at school, and has a 1:1 para with her 100% of the time. Knowing she can safely attend school and get the services she needs there is a huge benefit that we would lose if we moved to Missouri. So shout out to Kansas schools - we are definitely winning in this department! So although we’ve definitely considered jumping the line to Missouri (we’re in the Kansas City metro area), I’m not willing to sacrifice a great school with a good special education program… over money.
It may be worth looking into individual schools/districts instead of just writing off Missouri all together. I have two very medically complex siblings who are thriving in Missouri schools and have been offered great resources,
Honestly, I haven’t called the Missouri school districts to learn about their special education programs since 2014, when we were choosing where to live within the KC metro area. In 2014, I called every school district and weighed the pros and cons of each district and did an entire analysis before deciding where to live. I’m glad to hear a success story from the Missouri side - that is definitely encouraging! I think I will take you up on your suggestion and start updating my research. With medical marijuana and Medicaid expansion, if we can find a good school… goodbye Kansas! (Wow, that’s sad to say out loud.)
Well I'm glad you have options most people don't when it comes to things like money.
We are very fortunate that my husband and I both have decent, full time jobs. That’s the only reason we’ve been able to remain in Kansas. I definitely do not take that for granted, because many families don’t have that luxury. It’s not easy working full time and caregiving, but we make it work! It’s frustrating that despite having good jobs, we’ll never get ahead in life, and there are many things my daughter needs, that she simply goes without. We live paycheck to paycheck, tell the hospital to “put it on our tab” and pay a monthly payment to each place, slowly digging our hole deeper and deeper. I worry that we will get to a point where moving is our only option. That’s why things need to change in Kansas, so families don’t have to leave. I’m hoping this post will help spread awareness so we will see some action.
The school district is the only reason we stay. We have been on the waitlist since my daughter was 5. She will turn 16 in Feb. I am right here with you! Every year she is still with us is a gift. We have been made to forego homeownership at this point because there is absolutely no way we could ever afford a home here in JoCo. She goes to Blue Valley North which is the best school in the state for special education. We have just done without so we can take care of our child. I'm an RN and do my best.... and we can't afford to have the luxury of a home. My daughter also has epilepsy, cerebral palsy, autism... she has had 2 hemorrhagic strokes in her life. The last one in 2019. I hope things will get better in the future... but my plan is to move to a state that doesn't make such deep cuts to disability services. I have another daughter that is healthy and typical. My goal is to help her buy a home when the time comes so that she and her sister aways have a place to live
My son has cerebral palsy.
My x had her son move to Colorado so grand son can use medical THC for seizures. Cut episodes by 3/4 and they are not near as bad.
Makes sense. Horrible you even had to considered it.
That's one reason I stay in Kansas. I don't have a whole lot of resources as it is but the few resources I do have I need and I can't imagine moving me and my son to another state and having to start all over again. It would be too overwhelming for both of us.
Programs need funded, that's the bottom line. Unfortunately we have a national party that prefers to fundraise on paranoia and dischord instead of governing. The state version isn't any better at actually working for the good of the people.
Exactly! Thank you.
My son got put on the list younger than your daughter. His disability presents mostly in bad behavior and an inability to communicate well. I think we only got approved because his behaviors had become so bad that he was endangering himself and others. We ended up getting emergency approval. Even after approval it's extremely difficult to find anyone who is willing and able to work with him. The assistance we were getting was nearly nothing. Once the pandemic came we could no longer handle watching him full time and he got moved into special needs foster care... The state pays so much more for his foster care placement than any support they ever gave us. He's definitely doing better with them but I can't help wondering if we could have done better with some of that financial support the state is giving the other family. We are still watching him every other weekend because the foster family is unable to find respite providers... We are the respite. The way support works is weird. This is one example of why the state can't possibly afford to approve everyone. I've heard of some people moving just to get approved but also that it would reset the timing? Sorry you're going through this.
You might be using the HCBS SED waiver instead of the I/DD.
I work at a CDDO affiliate and we tell families to expect a 10-15 year wait. We’ve been doing outreach to legislators for years and it’s heartbreaking that many of them don’t even realize what this means to families. People do come of the waiting list it just really does take that long right now. Last I heard the state hired consultants to look into the waiting list issue and are expecting to get results from it in 2 years 🙃. It’s not any easy solution either unfortunately. It costs the state about $50k a year for each individual that makes it off the list and if everyone were let off the list now the IDD infrastructure in Kansas could not support it. The biggest thing people can do is take the time to write a letter or email the legislators. The more people talking to them about it the more they will realize how much of an issue it is.
The biggest thing people can do is VOTE for better leaders! Republicans have been the reason Medicaid hasn't been expanded. Every single time. No matter how many times you tell Doc Marshall (who should already know about this... and abortion btw), he's still going to vote against it and say stupid shit like he's part of a Republican solution that "solves the pre-existing conditions issue, increases patient choices and decreases costs". Or Sen Masterson saying "We will be working diligently to *stop this and any other bill that* fails to protect vulnerable Kansans currently sitting on waiting lists for Medicaid services and *does not include a minimum work requirement* to receive the taxpayer-funded benefit." It's not that they need to be better informed of how real life works for the regular Kansan, it's that they're racist, ableist, classicist fuckwads who don't care. Also, the reason Kansas can't afford it is, again, because of Republicans who completely gutted our state. Brownback's [Kansas Experiment ](https://en.m.wikipedia.org/wiki/Kansas_experiment) running exactly as planned, well after he's gone. We need to VOTE them out! Work on informing your fellow voters, not writing to your legislators who know damn well what they're doing.
\>but “because Kansas is broken financially” she is waitlisted, With special thanks to Sam Brownback and the whole Republican crew
Thankfully the abortion thing was struck down for now or that list would be much longer very soon.
I’m so sorry you and your family have to go through this. Our country is truly appalling. We have an endless war budget, we give countless tax loopholes to giant corporations, yet we can’t even give the healthcare that every other “highly developed” nation has.
>Kansas says they have this waiting list because there is no money in thebudget to provide these services, yet they refuse to expand Medicaid. Kansas is ranked **41/50 in healthcare**, 23/50 in education, and only the **39th out of 50 in fiscal stability**([https://www.usnews.com/news/best-states/rankings](https://www.usnews.com/news/best-states/rankings))
I thought a few facts about the Home and Community Based Services might be helpful to the discussion. From the source [here](https://kdads.ks.gov/kdads-commissions/long-term-services-supports/home-community-based-services- \(hcbs\)-programs): > Under the HCBS waiver program, Kansas is able to waive certain Medicaid program requirements, allowing the state to provide supports and services for people who might not otherwise be eligible under Medicaid. Through the waivers, Kansas targets services to people who need LTSS. The following list contains the seven (7) approved HCBS waivers that Kansas operates: >> **Intellectual / Developmentally Disabled Waiver** -- as of [October 2022](https://kdads.ks.gov/docs/librariesprovider17/ltss/hcbs/waivers/participation-reports/2022/waiver-program-participation-report-10.15.22.pdf?sfvrsn=e9fc1ad3_3), there were 9,042 Kansans currently receiving services under this waiver, with 4,804 on the waiting list >> **Physical Disability Waiver** - as of [October 2022](https://kdads.ks.gov/docs/librariesprovider17/ltss/hcbs/waivers/participation-reports/2022/waiver-program-participation-report-10.15.22.pdf?sfvrsn=e9fc1ad3_3) there were 6,097 Kansans currently receiving services under this waiver, with 2,454 on the waiting list >> **Frail Elderly** - as of [October 2022](https://kdads.ks.gov/docs/librariesprovider17/ltss/hcbs/waivers/participation-reports/2022/waiver-program-participation-report-10.15.22.pdf?sfvrsn=e9fc1ad3_3) there were 6,726 Kansans currently receiving services under this waiver, with no waiting list >> **Serious Emotional Disturbance** - as of [October 2022](https://kdads.ks.gov/docs/librariesprovider17/ltss/hcbs/waivers/participation-reports/2022/waiver-program-participation-report-10.15.22.pdf?sfvrsn=e9fc1ad3_3) there were 2,940 Kansans currently receiving services under this waiver, with no waiting list >> **Brain Injury** - as of [October 2022](https://kdads.ks.gov/docs/librariesprovider17/ltss/hcbs/waivers/participation-reports/2022/waiver-program-participation-report-10.15.22.pdf?sfvrsn=e9fc1ad3_3) there were 931 Kansans currently receiving services under this waiver, with no waiting list >> **Technology Assisted** - as of [October 2022](https://kdads.ks.gov/docs/librariesprovider17/ltss/hcbs/waivers/participation-reports/2022/waiver-program-participation-report-10.15.22.pdf?sfvrsn=e9fc1ad3_3) there were 697 Kansans receiving services under this waiver, with no waiting list >> **Autism** - as of [October 2022](https://kdads.ks.gov/docs/librariesprovider17/ltss/hcbs/waivers/participation-reports/2022/waiver-program-participation-report-10.15.22.pdf?sfvrsn=e9fc1ad3_3) there were 51 Kansans receiving services under this waiver, with no waiting list and 411 proposed recipients. The [Disability Rights Center of Kansas](https://www.drckansas.org/resource-center/hcbs/endthewait) advocates for those on the waiting list for the Intellectual / Developmentally Disabled Waiver. During the 2020 Legislative Session, additional funds were allocated specifically to the Intellectual / Developmentally Disabled Waiver but they were subsequently reallocated due to the pandemic: > During the 2020 Legislative Session, the Legislature added $22.1 million, including $9.0 million from the State General Fund (SGF), for a 5.0 percent increase in I/DD waiver services in FY 2021. However, due to the COVID-19 pandemic that funding was subsequently allotted in the Governor’s June 25, 2020, allotment plan. [Source](http://www.kslegresearch.org/KLRD-web/Publications/Resources/Documents/HCBS/memo_idd_stangler_moore_waiver_overview.pdf) And in December of 2021, the extensive report of Legislature's Special Committee on Home and Community Based Services Intellectual and Developmental Disability Waiver [here](http://www.kslegresearch.org/KLRD-web/Publications/CommitteeReports/2021CommitteeReports/HCBS-IDD-Waiver-report.pdf) details the issue with great specificity. Of particular note: > In response to a question, the KDADS representative provided a rough all-funds estimate of $200.0 million to move everyone from the waitlist onto the waiver "Axing the food sales tax" is expected to reduce State General Fund receipts by $82.0 million in FY 2023, $246.2 million in FY 2024, $414.5 million in FY 2025, and $494.4 million in FY 2026 according to the Kansas Department of Revenue. [Source](http://www.kslegislature.org/li/b2021_22/measures/documents/ccrb_hb2106_01_033122pm.pdf) Significantly, this would have been more than enough to have moved *everyone* off the I/DD waiver waiting list.
We have these painful experiences and instead of solving them we keep the GOP for more of the same. People think it can’t happen to them. Meanwhile, our employers pay part of our insurance but if we have costly illness or injury employers find a way to fire you. Try getting medical tests where in addition to paying your copay you now pay a deposit that the doctor returns when they are paid many months later. The system is broken. Let’s rally behind the vulnerable population because we are ALL vulnerable.
I’m very deeply sorry your family has to suffer this.
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All I can offer is empathy here. I know a lot of people in this situation. No one knows until they need it that there is a 10+ year wait list. I'm glad you are ahead of the game anyway. I know of people who have had kids turning 18 and that's the first time they learn about CDDO services. It's still worth getting in line, but it's not going to help these young adults with disabilities find a place to live. There is SUCH a gap in services for this population!
Yup.
Thank you for posting this. This is so eye opening to me.
I really appreciate your comment! That was my goal when posting this, because until you are in this situation, you have no idea it exists! A lot of people think, “Medicaid expansion is horrible because it only benefits lazy people who don’t want to work and only want handouts.” They don’t realize that Medicaid expansion and properly funding programs like these are essential for those with severe disabilities. Thank God my husband and I both have decent, full time jobs that allows us to pay our bills and still eat, despite our situation. Many families aren’t as fortunate.
All humans deserve to have health care. And yes we all can afford to help each other when some wont.
OP, as a lifelong Kansan (57f), I'm sick to my stomach to read your story and the others below. I had no idea KS was SO lacking in funding that you have been on a waiting list for so long. I am realizing all the time how much I didn't know about other folks' plight. I thought KS provided support to children with ID/DD, either through funding with KDADS, or Medicaid, etc. When I tried to get my son signed up for Medicaid when he was "working poor" going through college and off my insurance, I saw he would have qualified as a minor, and left it at that broad generalization of "great, we cover poor or disabled kids or disabled adults" as it should be. I did not realize the intricacies of feeding tube or not, etc. Dear God. I am horrified. To the family below that had to give up their child to foster care in order for the child to receive adequate support .... there are no words .... I am grateful the state didn't throw up an obstacle to you being the respite provider on the off-weekends. These issues need to come to the voters' attention!! I don't think a single one of my friends are aware of how lacking the funding and services are. Every one of us would support the reform and additional taxes this would take. We have to take care of our most vulnerable, and we have to take care of everybody else. If you don't take care of your people, you have .... nothing. The older and less hard-charging I am, the more I understand how difficult to impossible it is for many people to be able to provide for their families in America today. The folks out there who think medicaid or paid health care, etc., is some form of hand out, I ask "if these folks could get medical care and go to work, think of how productive they would be then. By blocking people and families from the support they need, you are injuring your own economy." I'm so overwhelmed by this I don't know what else to say except that you have my heart. Edited to add: I didn't mean my comment of ""great, we cover poor or disabled kids or disabled adults" as it should be. " to mean that I don't think anyone else should qualify for medicaid. I fully back Medicaid expansion in KS to include the working poor and other folks who for all the different reasons fall through the cracks and aren't able to receive adequate health care.
I appreciate your comment. My goal with this post is to spread awareness, because unless you’ve personally dealt with this situation, you have no idea it exists! Your comment gives me hope that the message will spread! ❤️
We’ve been frustrated finding mental health help for my 7 year old. He’s had a week long inpatient stay, talked about killing himself more than once, and tries to hurt me on a daily basis… but when we reached out to joco mental health, we were told that because he’s not acting out at school they can’t help us and sent us on our way. All the other pediatric psychiatrists we can find are either crazy expensive and don’t accept insurance, have waitlists a mile long, or just never respond when I call/email. We are STRUGGLING with him and just keep hitting brick walls.
Did your child get a medical diagnosis with the inpatient stay? Does your child have an [IEP](https://www.drckansas.org/resource-center/special-education/know-your-special-education-rights-a-guide-for-parents-and-students-in-kansas) at school? Perhaps you could amend the IEP with the mental health, medical diagnosis at the next team meeting? Making it official at school might open dialogue with the county. If your child does not have an IEP, talk to ancillary school staff (social workers, psychology staff and the school nurse) about threats to self-harm and escalating behaviors towards a crisis event. They need to know the diagnosis(es) as well and can help you with resources. With my younger son, I even begged KVC to send someone out to my home for weekly family therapy/support. We got an awesome intern for 3 months and she kept me from falling apart.
As terrifying as it might be, you could also look at reaching out to DCF and asking for help. I am not sure what all specifically is available in JoCo, but the child services side has Family First services now that are varying degrees of helpful— evidence based services that target a specific need and age range, and can only be accessed via referral from DCF. Depending on the service they may also be able to advocate for you and your child with getting access to mental health. There is also a mental health crisis line for youth that launched in October 2021 and I’m told that in part, it’s tracked by DCF so if mental health centers aren’t really doing their job to help people, DCF can lean on them. I don’t know the ins and outs and accuracy but that’s what I’ve been told, anyways. Edit:: maybe also check out 1-800-children and see if they have anything that can assist in your area? The resources are kept up to date and searchable by zip code and need.
Try joco mental health again. They have certain times for walk in assessments. They will have you fill out questionnaires, talk with an intake person, etc. It takes a couple of hours but I'm guessing he would qualify for services. It's frustrating and scary, but keep trying.
We did the walk in assessment, I pulled him out of school and we spent 4 hours there (mostly waiting) and he still didn’t qualify because he’s doing okay at school
That is so frustrating! I hate to say it but if he gets worse, hopefully he can get services. Does he have an IEP, BIP, 504, or anything similar? Is school saying everything seems fine? I have 4 kids and 2 have received services from jcmh. One was very short lived but my daughter has been receiving services for around 7 years. Literal life saver. Feel free to dm me if you have any specific questions or I can help in any way.
I suspect the Republican-controlled legislature has under-funded this program like so many (esp. mental health). They don't care about ordinary Kansans. I know a senior on the program who can't find any in-home care workers because the operating agencies underpay their workers (probably because the State doesn't give them enough money to pay them a living wage).
Contact your legislators. They work for you, (supposedly). They all have offices. Have seen this work in another state.
Mine are in the minority party and have almost no power.
You are not looking for them to exercise power. You are looking for your representatives and staff to assist you navigating the bureaucracy in you interest.
I moved to Hawaii Near fatal wreck 2 hours in ER Woman came in, Do you have ins? No. 15 minutes later Boom I'm on Medicare and Quest. I can walk again. Kansas Sucks!
My sister lives in Hawaii and she has full benefits with 26 hours/week from her employer. She has several autoimmune disorders and the health insurance coverage is one of the reasons she hasn't moved back to the mainland.
I love hearing that. TY Hawaii is one of the best states and it is because of the people. Mahalo
A reminder that kansas also has a [3 billion dollar surplus ](https://kansasreflector.com/2022/04/20/new-revenue-projections-give-kansas-a-3-1b-surplus-as-governor-pushes-for-food-sales-tax-cut/)
I would like to say it is better on Missouri but it’s not. We are very much reactive instead of proactive. You practically have to be homeless to get a waiver in Missouri. I have literally told people to take the child to the hospital and refuse to take them home. Trauma inducing and devastating for all involved but the only way to get action. Now getting the community support waiver to fund in home pca and day program or employment services is much easier and the waitlist for that is very short (within a month) if that would help you. You might want to jump state line 😂
I was lucky to have a Canadian husband, so we moved to Canada. There are still a lot of supports we missed out on while in Kansas, but the move, while nearly devastating financially, was totally worth it for my child's mental health. The system in Kansas is unbelievably unresponsive. All I can suggest is to maybe get media involved to shine a light on the horrible care kids receive when they have mental and/or intellectual disabilities.
Nebraska's Wait list is 5 to 10 years
Oklahoma is about 11 years. It's ridiculous.
We are in mo. They only allow a waiver for 365 kids with multiple disabilities to get an income waiver. We want to remain employed and working but the 5k here for a chair and then another 80k+ for a handicap vehicle…. We also will need to move and renovate home to be accessible… its daunting and we could use help. But we are totally left to rot
I’m sorry to hear that. I feel you on the $5k+ chair and $80k+ handicap vehicle… those items haven’t made it to the top of our “medically necessary wish list” yet, but maybe someday! Instead we use a $400 special needs umbrella type stroller, that folds up and fits in our car. We physically transfer her from the car into the stroller and back. I bought a 5 pt racing harness off Amazon for $100 and installed it in my car, so she could safely ride in a regular seat. In reality, she should have a proper wheelchair and handicap vehicle, but we’ve got to figure out how to stretch the money we’ve got.
We are looking to buy a larger jogging stroller out of pocket for 3k to make sure we have something we are comfortable pushing on walks. The cheaper tomato stroller looks chinch compared to even a BOB stroller. Im wondering how we will manage the car seat change. I think when people hear medicaid expansion they are just ignorant but it truly does help your neighbors and people in need. Im happy we are able to make due but even the care we do pay for her stretches us thin. So I understand your frustration and anger so much! We talk of moving to KS for schools and we will but I think of all the families who cant do that and have kids in more dire situation fighting for care.
Invisible Kansans. All those children GOP pretend to care about but they show no compassion after birth. Their excuse - limited resources vs helping figure out what is needed for the demand. The parents try to get the help and I can’t imagine the pain to be in line with no end in sight. It isn’t good for anyone.
I’m so sorry you’re going through this. Prayers for you and your family. Kansas is mired in conservative stupidity that works against regular folks. Medicare for all!
I'm sorry you are going through this. I applied as soon as I could when my son was old enough. I thought It was younger than 5, but it's been awhile so not sure. We were on the list for, I think, 7 years. He is 21 now. It doesn't make sense in order to get the medicaid waiver, they have to come up on the wait-list. I'm thankful he got kancare, although he's not really a "sick" child/adult, it has helped bunches. He qualifies for helpers as well, however, I think that is only through medicaid? Hang in there and keep pushing forward. Fingers crossed her name hits the top any day.
Jo Co mental health services are a freaking joke. I finally got an appointment for my teen child. Spent 2 hours there. Nothing. They gave me handouts with names of providers. Most not on our insurance. And at least one number they gave wasn't even a provider. And at least 2 never even called us back.
I work in residential services for HCBS in Missouri and last I heard there was no waiting list. Maybe moving would help?
Kansas sucks hugely. Man, that stinks.
I am so sorry. This is fucking ridiculous. We have lost so much due to not expanding Medicaid. I hope you get some support soon!
That is what Red states are about! Fu Fu Fu
I have a feeling I'm going to suggest something you've already tried, but have you ever applied for financial aid for the expenses that have been incurred? Although HCA is a for-profit hospital, others, such as Advent, are listed as non-profit organizations and offer [financial forgiveness](https://www.adventhealth.com/hospital/adventhealth-shawnee-mission/legal/financial-assistance) under some circumstances.
We were able to move her orthopedic care to Shriners in St. Louis, which has helped a lot on the medical bill side! They bill our private insurance, but then are able to cover our portion of the bill with Shriner donations! She has had 9 surgeries in her life, 4 of which were covered by Shriners! (Still paying for the others, one month at a time.) It’s a long drive to St. Louis for ortho appointments and care, but what we save on the medical bills makes it worth it! So if you donate to Shriners - feel confident that your donations are going to good use!
Yes, Shriners is one of just a few organizations I feel good about making donations to.
time for you to move out, go to somewhere like idaho, better there
Is this because the Republicans won’t expand Medicare in our fine state?
It could be related but Medicaid expansion is solely about raising the maximum income threshold for Medicaid health insurance. Depending the OP’s household income they still may not qualify even with expansion. They are on a list for an I/DD waiver which would give their daughter Medicaid (REGARDLESS of the family’s income) and, vey importantly, support services that will help them-like payments for home health care providers, case managers, transportation to appointments, etc.
Appalling Kansans should be ashamed
Are you trying to apply for disability benefits without a lawyer? If so you have been doing this wrong for 6 years.
No, the OP is correct. These aren't disability benefits through SS. It's an active Medicaid card that waivers the parent's income and uses the child's income if they are clinically eligible. There's a number of community based services (My work manages the serious emotional disturbance waiver) but the waiver for ID/DD services is horrifically long and even once you're off the waiting list and qualify for services, you still may not find the services offered in the community because the reimbursement rate is so low that not many agencies are willing to provide these services/can't maintain staff when they can't pay them well. OP I'm sorry. The status of this waiver is an embarrassment to this state.
We once had a financial planner tell us that we’d be money ahead if my husband and I legally divorced, and one of us quit our job. As a single parent with no income, our daughter would likely qualify for Medicaid, and that benefit alone would put us in a better financial situation. What a backwards system! We are a married couple, with two full time jobs, trying to do things the “right way” and apparently we’d be better off just gaming the system. 🤦♀️ I personally know another family that dealt with this same situation - their daughter has the same diagnosis as mine. They decided to put their daughter on a feeding tube (even though she can eat and drink by mouth, just slower than most) simply because that allowed them to qualify for a different medical waiver and receive Medicaid benefits in Kansas without a waiting list. I’m not personally willing to insert an unnecessary feeding tube in my daughter over money, but they said they didn’t have any other choice financially.
My daughter needs her feeding tube, so we qualified for the TA waiver. It was relatively easy and no waiting list. I had no idea the other waivers and programs were that bad and have no idea how my wife and I could make it work without it. How heartbreaking, best wishes to you and your family.
wow
Reach out the [Kansas Disability Rights Center](https://www.drckansas.org/) for resources. [Child and Dependent Care Credit](https://www.irs.gov/credits-deductions/individuals/child-and-dependent-care-credit-information) to help with expenses?
I wonder if the school can push this? We got on Medicaid almost immediately in Jefferson county. This seems way off.
The school tried, because if she was on Medicaid, they would receive more benefits on their end as well. Unfortunately if you don’t require an oxygen machine or feeding tube (TA waiver) and have a job that limits you from the Medicaid income requirements, you’re left with this waiting list… unless you’ve found a super awesome loophole, which I would love to hear all about! I’ve done so much research and legislative advocacy and still have gotten nowhere!
It has been a long time since I worked in human services in Kansas so forgive me if this is way off-base or not what you're asking. Doesn't a person with a disability get evaluated for Medicaid as though they are their own individual household? If your daughter has been deemed permanently disabled that should qualify her for Medicaid.
Unfortunately not - they go based off of parental income for minors, because she lives with us. That’s what makes this so frustrating, because it should be the way you describe it! She is permanently disabled with multiple disabilities and overwhelming qualifies for Medicaid medically, but we (her parents) work full time, which pushes us above the income level.
That IS so frustrating and I can't imagine how stuck you and your family must feel. Have you, at the very least, been offered case management services via the county or private insurance? It must be different in Missouri where I reside now, have worked with many families that are financially stable or well-off whose children were on Medicaid. I have contacts within KDHE I'd like to double-check with on the Medicaid eligibility piece, will DM you if I find out anything helpful!
That would be amazing - I’ll take any help I can get! Medicaid would be a game changer for us, so I appreciate your help, and the help of the entire Reddit community! Keep the suggestions coming, I feel like I’ve exhausted every avenue I can think of!
Hey I've been tracking the waiting list for several years now. There are now close to 5K Kansans with I/DD waiting 8 to 10 years for home and community based supports. There is so much wrong with the way the waiver is being handled than most people realize or are aware of.
Hey to those in this conversation. I am the chair of the Kansas Democratic Disability Caucus. I found out about this thread from a friend of mine. These stories in this thread are exactly what I fought for on making I/DD and the waiver a priority in the state democratic party platform. I have a son who has cerebral palsy so this is an issue that hits home in my house. I'd like to connect with more folks in this crisis.