question about health insure/disability

[Butwhyistherumgone?]

Please forgive my ignorance, I am asking for a friend that just found out that her DS probably has muscular dystrophy.

When a child is diagnosed with a debilitative disease such as MD are they then eligible for state disability?

My friend's DS has health insurance but the monthly premium is high and the deductable is too. They already have mounting bills and they are facing many more. She is a SAHM and they are living on her DH's cop salary. They did until recently quailify for MC+ but her dh got a raise and they were forced to get insurance throught his job for the kids.
I just wondered if he would be able to benefit from state assistance. Please do not flame me for asking this. I am just trying to help in some small way. I did suggest she to talk to a social service person at the hospital to help and referred her to the Children's miracle network.

thanks for you help

 

[SueM in MN]

I did suggest she to talk to a social service person at the hospital to help and referred her to the Children's miracle network.

thanks for you help

I think Children's Miracle Network mostly gives grants, etc to facilities that provide care to children, not to the families themselves.

The Social Worker at the Hospital is a great place to start because they will know what services are available in their state. Every state has a program to have the option of offering Medical Assistance to children with disabilities/chronic conditions. Different states call it by different names; common names are the Katie Beckett Program or the TEFRA program. You can look up the information for your state (it will be in the Department of Human Services or Social Services), but the Social Worker will know how to help them.

One other thing to be aware of, is they look at the child's condition/situation to determine eligibility and also look at child's income. Since most children have little income, they are able to qualify based on their income. Those things determine whether or not the child is eligible. Then, they look at the parent's income to determine whether or not the parents will have a co-pay.

 

[BeckyScott]

Sue, that might depend on where you live.

Until recently, our son was on straight Medicaid and SSI both. When my husband got his new job, and health insurance for our family, both programs dumped us in a heartbeat. Medicaid dumped us because my husband's workplace provided insurance at a reasonable premium, there is a way to "over-ride" that for a child w/ disability but they look at the family income. So bye bye Medicaid. We tried for MC+ but they looked at total family income and since we had available health insurance, it was a no-go. SSI we had to turn in income for all members of the household, and our check was adjusted accordingly- if one of us worked overtime or got bonus money, the SSI check was smaller.

I'm not an expert at it, but that was what happened with us. It kinda stinks because of course our current health insurance isn't going to pay for as much as what Medicaid would. When I talked to our DFS caseworker, she was really nice (no attitude) and there just wasn't anything we were eligible for. We do have the option of going thru a local center that does get private donations and grant money, if there is something we need help with, but that's not a guaranteed thing.

 

[SueM in MN]

Sue, that might depend on where you live.

Until recently, our son was on straight Medicaid and SSI both. When my husband got his new job, and health insurance for our family, both programs dumped us in a heartbeat. Medicaid dumped us because my husband's workplace provided insurance at a reasonable premium, there is a way to "over-ride" that for a child w/ disability but they look at the family income. So bye bye Medicaid. We tried for MC+ but they looked at total family income and since we had available health insurance, it was a no-go. SSI we had to turn in income for all members of the household, and our check was adjusted accordingly- if one of us worked overtime or got bonus money, the SSI check was smaller.

I'm not an expert at it, but that was what happened with us. It kinda stinks because of course our current health insurance isn't going to pay for as much as what Medicaid would. When I talked to our DFS caseworker, she was really nice (no attitude) and there just wasn't anything we were eligible for. We do have the option of going thru a local center that does get private donations and grant money, if there is something we need help with, but that's not a guaranteed thing.

You are right. My reply was a little bit too simplistic.

Katie Beckett was a little girl who was living in a hospital because she needed a ventilator to breathe. The costs were paid for as long as she was in the hospital, but not if she came home. Her family fought to get the care that she needed paid for at home, rather than in the hospital. That's why in some states, those kind of programs are called Katie Beckett program or
Katie Beckett waivers.
TEFRA is the Tax Equity and Fiscal Responsibility Act was enacted by the US Congress in 1982. Part of it had to do with providing a special eligibility process for children with long term disabilities or complex medical needs, who were living at home with their families, to obtain a Medicaid card. It is a national program that allowed states to provide Medicaid to children. The intent of it was that children with such complex needs that they would otherwise have to be in some sort of placement outside of the home would be able to stay home and be cared for. What I wrote in my first post and that is how some states administer it (MN and WI, the 2 states I am most familiar with do it that way). In our case, we had applied for TEFRA for DD when she was about 10 and even though she qualified, we chose not to get it for her because our income made us have a high co-pay. I was a nurse in a home care agency that cared for children with special needs at the time. Most of my clients were under the TEFRA Program with a small or no co-pay. Some states choose to not participate and some handle it differently - in some cases covering children who did not have quite so complex of needs, in some cases 'gutting' the program so that few are eligible or limiting the conditions that are covered and in other cases making the co-pay very high so people don't participate.
Some states also have programs for uninsured or 'underinsured' kids (not all states do). Those are based on the total family income. SSI is based on the child's condition for whether they qualify at all and then on total family income on whether or not they will be eligible for any assistance.

Not knowing what state they live in, a social worker in that state would be able to tell the family how it works in their state though, so that is a good place to start.
Also for right now, www.mda.org (the Muscular Dystrophy Organization) would have information on their website that would be helpful. If she actually has MD, there are other things they can help with.

 

[dclfun]

I was going to also recommend MDA. They pay for all testing for a diagnostic workup and have the ability to pay for "some" equipment, plus their social workers would also be able to look at her state's assistance programs to see what they would qualify for. Each state is different so there's no cookie cutter rule on eligibility or even available programs. For someone with MD though the costs will be much greater further on but may be very few for someone young and just diagnosed/still ambulatory.---Kathy

 

[BeckyScott]

Sue, I'm in Missouri, which might have something to do with it. Not to get political but our governor hacked the Medicaid/MC+ system to pieces, along with cutting and complicating the state's early intervention program so much that therapists were running for the woods like crazy. If I met him in person, I'd probably have to slap him.

It sounds like both of those programs are geared toward keeping kids at home who would have to otherwise be hospitalized/ institutionalized. And I don't have any experience with that, probably Missouri has something in place for that, but it hasn't been an issue for us. My experience has only been with one kid with a developmental disability, and his physical problems aren't nearly as severe as someone with MD. So.

To the OP: yes, check with the hospital social worker. And any state and private agency you can find! And check into disability/ SSI, actually the income guideline goes fairly high, I think a family of four can earn something close to $50 grand a year and still get some money. Doesn't hurt to ask!

 

[Butwhyistherumgone?]

Thank you for all the responces
Becky ~ we live in MO too and what happened to you sounds like what happened to my friend. Her DH got a small raise and MC+ told them the insurance his work offered was "reasonable" so they had to get it. The premium per month isnt too bad( $200) but the deductable is $1500 per person and then 20% with a huge OOP per year. They have a pretty low income for a family of 4.
Again, thanks for all the suggestions. I will pass them on to her.

 

[BeckyScott]

Our DFS caseworker told me- there is a way to somehow get MC+ anyway, if the child has alot of medical need, even if income is too high or insurance available... IF... the private insurance does not cover all the things necessary for the child. Like, for example, you cannot get rx coverage, and can't get the meds reduced $$ from the drug company, but the child requires alot of meds. That might be some wacky state's version of the Katie Beckett. It apparantly involved a whole lot of paperwork pushing and would take some time to process, and in our case she was sure it still wouldn't work, because our current med insurance is pretty good stuff and the premium is very low. However, like I said before, Justin's medical needs aren't the main issue.

Doesn't work very well for other stuff anyway. On Medicaid, as long as we could find a provider (which got tricky after Blunt messed with the Medicaid program), he could have therapy every darn day and it would be paid for. When he was a toddler, we did have some sort of therapist at our house every day, I considered a revolving door. Our insurance now will pay 50/50 for 12 visits a year. That's a big difference! But since we do have "coverage" for therapy, they consider that good enough and believe that the school system will take care of most of his therapy.

I must say, I'm still in shock over it, really. Justin was on MC+ or Medicaid from birth to age 6, and I had a pretty good understanding of how it all worked. We've only had private health insurance for the past year, and it's a whole different world. I am happy and proud that we have the insurance, you know, not dealing with DFS anymore, not feeling like a second class citizen... but the whole health insurance and medical industry is so wacked. I really feel for your friend, just starting down that road, because it's a full-time job dealing with all the paperwork and logistics, she's about to start on a very long journey.

On that note, have her start now keeping all his paperwork. Our stuff for Justin is all in a 3-ring binder (two of them now, actually)-- all the diagnosis paperwork, our original SSI paperwork, medical stuff, IEPs and school stuff-- she's going to want to have copies of every single thing that happens with him. She'll need it, it's much more expedient for her to be able to provide copies to people when necessary, then for them to request it from the original source and wait for copies to be sent. When I went to apply for SSI, I had probably a 3" stack of paperwork with me, they didn't have to request anything from any doctor, and it made the whole process so much faster. And if he's seeing more than one doctor, they may or may not be communicating with each other, so if she can tell them exactly what all has happened, what testing done and when and everything, it makes a huge difference.

 

[Linda Bell]

Please forgive my ignorance, I am asking for a friend that just found out that her DS probably has muscular dystrophy.

When a child is diagnosed with a debilitative disease such as MD are they then eligible for state disability?


thanks for you help

Boy can I relate to this one...

Single mom here...3 kids...one with muscular dystrophy and one with spina bifida.

My income has always been considered too high for any state programs. The threshold is really for the ultra low income (there are a few circumstances besides income that figure in). For Washington state where I live it is only $24,000 + change for a year for a family of 3. You can check your state online. The states vary because they fund 50%.

On the plus side I do have good medical insurance and they will continue to cover my daughter (the one with MD and now age 30) for as long as I work for my company.

At 21 she qualified for Medicaid, SSI, and food stamps because it based on her income level which is zero. He may qualify at 18. She didn't. She gets $112 in food stamps, almost $500 in SSI and her medicaid coupons (which so far in her life has covered about $300 total as the only thing I have found that they would cover is her $10 copay as my insurance is considered prime). I was told they would cover $1425 of her wheelchair ramp but I'm still working on that one. She also gets care provider coverage which is over 160 hours a month if needed. She is considered completely disabled and needs 24/7 care.

MDA also requested that I use my insurance company for most things but they did cover her orthotic shoes since insurance didn't and I do go every couple of years to the clinic just to check in and see what's new. They will not turn you away. They are just trying to maximize the funds they do have. I usually get a referral from my insurance so the MDA clinic gets paid. It has never been a problem to get a referral anytime I have requested one.

MDA has a few really neat things she should be aware of...first is they know how to work the insurance and second is their fantastic and wonderful summer camp (free for everyone) that there is no way to say enough nice things about, and finally, the emotional support.

I wish I had great news. Once diagnosed their first action should be to get a referral to their local MDA clinic to see what is available but mostly to get questions answered.

Linda

 

[Butwhyistherumgone?]

Linda
Thanks so much for your post! I will pass the info on
How old was your DD when she was diagnosed with MD. My friend's DS is 5

 

[Linda Bell]

Linda
Thanks so much for your post! I will pass the info on
How old was your DD when she was diagnosed with MD. My friend's DS is 5

Umm, I honestly don't know. I got her at age 8. Her birth mother had it as did a brother (her form is Autosomal dominant so it would be watched for). They believe it was at infancy and she had surgeries that I have no records of. She was in over 30 foster homes. The adoption agency (special needs) even went to court to try and get records on my behalf. They did score however a couple of pictures of her very young that were stapled to a file folder (my only "baby" pictures) and you can see it in her face even then. She has myotonic MD and the characteristic facial features even as a wee little lass.

Linda

 

[dclfun]

I also wanted to give a glimmer of hope to them with their own private insurance. I have both private insurance through my employer and Medicare ( from my SSDI). Since I have both coverages, I took the less costly private insurance which only covers 80%. Even with the 80% though for most expenses, my insurance pays 100% of DME, which is one thing someone with MD will need. My last wheelchair which cost over 30K was paid for entirely by private insurance- no copay and no deductible. For children with Medicaid, the type of equipment that is approved is not always the best. There was a local girl here with SMA that was refused a power chair via Medicaid at age 10 even though she cannot push herself in a manual w/c. After her mother fought for over two years they still would not fund some of the features, such as tilt/recline, elevating leg rests or seat. She got only a basic, cheaper, power chair. I know as an adult, if I had only Medicaid I'd not get nearly the type of equipment funded that I have now with my private insurance. What they do want to look into though is Medicaid Waiver programs in their state and get signed up as most states have extremely long waiting lists. That is what will fund many of their future needs as the parents age and the child wants to be able to live independently outside a facility, which everyone deserves. They could also contact their local CIL to see if there are funds there to install a ramp once that becomes necessary or modify their home in any way to accomodate a w/c. When he grows older, Voc Rehab will fund many things for him if he's working, such as ramps, home modifications, and even vehicle adaptations. It's alot to deal with and I'm sure right now they're just dealing with the shock of the diagnosis. There will be people there to help them though on their journey and it sounds like the OP is one of those people who care. ---Kathy

 

[SueM in MN]

What they do want to look into though is Medicaid Waiver programs in their state and get signed up as most states have extremely long waiting lists. That is what will fund many of their future needs as the parents age and the child wants to be able to live independently outside a facility, which everyone deserves.

The waiting lists can be very long and sometimes when people are close to the top, funds get cut. So, it's best to get on the waiting lists.

 

[MarieS]

I agree with what others have said about getting on the states waiver waiting list. In Indiana, the waits are over 9 years long.

You might also want to see if your state has a CSHCS program--Children with Special Health Care Services. The income level is much higher than medicaid. They will cover medical care related to the eligible diagnosis as well as dental and prescription. This program has been a huge help to us in supplementing insurance.

 

[barkley]

Please forgive my ignorance, I am asking for a friend that just found out that her DS probably has muscular dystrophy.

When a child is diagnosed with a debilitative disease such as MD are they then eligible for state disability?

My friend's DS has health insurance but the monthly premium is high and the deductable is too. They already have mounting bills and they are facing many more. She is a SAHM and they are living on her DH's cop salary. They did until recently quailify for MC+ but her dh got a raise and they were forced to get insurance throught his job for the kids.
I just wondered if he would be able to benefit from state assistance. Please do not flame me for asking this. I am just trying to help in some small way. I did suggest she to talk to a social service person at the hospital to help and referred her to the Children's miracle network.

thanks for you help

if you are asking if they are eligible for any monetary funds from a state program due to the child's disability-it's not likely. the only program to provide income due to a child's disability is the federal ssi program-and eligibility to that is based on the parent's income when the applicant is a minor child. state disability programs are generaly those administered through the employment development department for adults who have a link though current or prior employment such that they qualify for temporary disability (length varies state to state-i think the longest any state offers it is one year-and it does'nt provide med. coverage, a separate application with different eligibility criteria has to be filed with h&ss).

one resource i used to refer my clients to was shriner's hospitals. reason being is because they will not turn any child away for an inability to pay for services, their administrative staff generaly know EVERY resource in the world to assist with med costs. while those of us at social services knew the programs we had available, shriner's staff knew of every private program and resource known to man in whatever state their individual hospitals were in. even if a child is'nt being treated by them, a call might result in getting some great information and referrals to organizations that could help.

since one of the parents in the op is a police officer, he might want to check with his union to find out if there are any programs they offer to assist with the child's needs. in my experience i've found that some of the public safety employees have tremendous support mechanisms available to them-advocates, special funds...might be worth a call there as well.

 

[spotdog]

I sure wish that out legislators could read this topic.

I used to live on SSI/SSDI Medicare/Medicaid in Washington State, Seattle due to my mental illness. The onset was when I was 25 yrs old and too old to go back on my mother's health insurance, but I lost my own insurance when I was too ill to work.

I have been back working to support myself for over 10 years now and sometimes I STILL need help from Medicaid to supplement my health insurance. People who work full-time and their children shouldn't have to spend all of their money for medical bills until they end up on welfare. In Washington State, this could leave you HOMELESS.

Please contact your State and Federal legislative representatives. Offer to TESTIFY about what has happened to you and your family. I DID and our state now has mental health parity. They listened to me. You can do it too.

I hope I didn't reveal too much about myself, sometimes I do that.

 

[SonicGuy]

Do a google search for MEDICAID WAIVERS BY STATE and you can find resources to give you a start. The entire process is complicated and demeaning and in my opinion designed so that yo will give up. We moved from Idaho in 2001 which has a Katie Beckett waiver program with no waiting list to Texas - oblivious to the fact that we would not be able to just sign DD up. We make a very good income and have very good insurance, but the OOP costs can still be staggering. When she got on the Texas waitlist we were told it was over 9 years long. She did just come up earlier this year, so it was only 5 years.

However, the people that administer that program have been a godsend. When our second DD was diagnosed with the same disorder as our older, they helped us maneuver through the system and found a way around the waitlist. She will go on next month. We do not use their medicaid coverage unless there is a catastrophic expense - none of the doctors in our area take it anyway - but it is peace of mind knowing it is there is something happens. Like my DD3's 32 day ICU stay that cost over $350,000!!!

Your friends need to talk to ANYONE and EVERYONE they can and get on waiting lists for every program they can, and then keep checking. When it comes to getting the best you can for your kids, you seem to never be able stop.

Good luck!