Special-need children need health-care allowances

[proud2BlibKansan]

Special-need children need health-care allowances
By DIANA CARAHER
Special to The Star
I would like to introduce my granddaughter, Serinady, who has a special story to share.

She is quite a character and has been a fighter from the very beginning, which is good because she has a lot of challenges to overcome. Serinady was born with a rare syndrome called Hallermann Streiff (150 reported cases). Within her first six weeks, she had two eye surgeries for cataracts and oral surgery for natal teeth. She has been to Children’s Mercy Hospital more times than you can imagine. She is 2 years old and weighs 15 pounds.

She has very tiny nasal passages and an underdeveloped nose that will need surgery. She has a dysfunctional palate that requires a feeding tube until the palate can be repaired. Because of her size, she is on a formula ($45/can) and is closely monitored by the Special Care Clinic at Children’s Mercy. She has sleep apnea and is on monitors and oxygen at night. Her specially made glasses were accidentally broken the other day at day care.

On that day, my daughter phoned, nearly in tears. We have had many similar conversations since learning that Serinady is no longer covered by Medicaid. Jaime and her husband, Tim, fell into the category required to switch to private insurance (“Transformation of Missouri Medicaid to MO HealthNet”).


more . . .
http://www.kansascity.com/273/story/63778.html

[Monkeyman]

1. SSI Must be given. WIC can help. If you have Pact in your area they will fight for you

[proud2BlibKansan]

2. They are stripping Medicaid from everyone in MO

After July, it is completely gone. When they started the cuts last year, they took whelchairs away from people!

[Monkeyman]

3. They have to go to SSI Now and stop that crap

SSI will give back Medicaid right away.

[proud2BlibKansan]

8. Are you sure about that?

I am not sure that is the case in MO.

[Rosemary2205]

10. I believe SSI is only for adults with disabilities.

I have an uncle who was born severely disabled and did not qualify for social security disability until he reached 18 yrs old - after 2 years he became eligible for medicare AND medicaid.

I do not know how far they live from Memphis TN but St. Jude there might be able to help with free medical care if the local Children's hospital cannot get her into a program.

And yes, it's SHAMEFUL what the states are being allowed to do to so called FEDERAL programs.

[proud2BlibKansan]

11. There is an SSI program for kids with disabilities n/t

[Debi]

12. SSI is for children as well as adults

but it's needs based as well as disability based so income is a factor in eligibility. Most disabled children who's household has an above the poverty level income are disqualified from SSI until they are 18. At 18 SSI is then based on the individuals income rather than the household's.

Doesn't make much sense to me. As a single mom working 30 hours a week my son's monthly SSI check was lowered based on my paycheck. Was fine w/me because what we REALLY needed was the Medicaid coverage. But I was only making $6.00 an hour, not really raking in the dough! When I got remarried he was immediately disqualified b/c of my husband's income and we had to find an alternative health care source (luckily we were able to turn to the Home and Community Based Waiver program).

Now that my son is 18 he qualifies for SSI but the dollar amount is decreased because he lives at home and we provide his housing and food. Again, fine with us, we don't NEED the money but we NEED the Medicaid coverage. If he ever moves out the $$ will increase to the full amount (which I think is $620.00 a month now) but will decrease if he gets a job (which he wants to do but may never have the ability to do.)

[Debi]

4. Unfortunately even with one income the household may make

too much to qualify for SSI. You probably already know this, but SSI for a child is based on disability and on household income, not until a person turns 18 does the financial qualifications of SSI rest solely on the disabled individual. (Learned this when I got remarried and my son lost his SSI and Medicaid for 90 days while we searched for assistance - finally found it in the Home and Community Based Waiver programs).

Seems repetitive that the Government continues to cut the funding for those most in need. Those who cannot speak up for themselves (hire lobbyists). Sad.

[Ilsa]

5. I bet her mom can't work even if she wanted to because she has

to stay home with her. I have to be home for my kids when they get home from school. I can't afford the cost of daycare for my autistic son, even if I could find qualified care.

Yes, something more than the "itemization of the excess over 7.5% AGI" of medical expenses needs to be included in tax exemptions or allowances. I heard two years ago on the Today Show that the average family spends an average of 8,000 per year more for their autistic children. It is horribly expensie raising a child with any disability, medical, developmental, or both.

Proud2Blib, I really feel for you and your daughter, her husband, and your granddaughter. I am amazed at how little help there s for these people who have chronic health problems. Sure, there are fundraisers for people with acute health problems, but rarely is there an organization to help people with chronic problems. I was referred to the Saint Vincent de Paul Society, but I haven't contacted them. I hope for the best for your little sweetie.

[Debi]

6. And finding quality care for children with special needs is a daunting

task. Few child care providers are prepared to welcome a special needs child into their home and learn what it takes to provide care for them. We were very lucky to find two great home-based child care providers for our son (had a few nightmare scenarios along the way!).

And Home Health care is so low-paid that it doesn't always attract the most qualified caregivers. It's hit and miss finding a competent (and caring) person to work in our home. We've been very lucky about 50% of the time.

[proud2BlibKansan]

9. Oh it's not me

This was a column in our local paper.

[Ilsa]

14. Oops! I blew right past the article intro.

But still, I'm sending out good vibes to that family today. I've had an okay day with my son at home all day. He's done a few autistic weird messy things, but I'v been able to hold my anger and frustration. Some days I can't -- I lose it. And then I drink too much or look for some other way to self-medicate, like with food.

[SheilaT]

7. But don't forget

we have the best health care system in the world! And at least you don't have to wait hours and hours for routine care, unlike those awful countries with socialized medicine! :sarcasm:

I get so incredibly angry at those -- ESPECIALLY doctors -- who constantly defend and justify this system. Apparently none of them ever have a child or grandchild with major health issues. Or they just don't get it that because they are part of the medical establishment they get all the care needed at less than cost.

I honestly think that one of the best things to do would be to dump kids like this literally in the laps of those responsible for her lack of care -- the Missouri legislature is probably the place to start. Obviously, that would be a fairly heartless thing to do, but it's probably the only way to get people to understand exactly what is at stake.

[bleedingheart]

13. these cases just upset me beyond belief...

we fund bombs that rip the limbs off kids in foreign countries that cost millions and millions to develop, manufacture and deploy...

but we can't fund healthcare for everyone who needs it?

our society is broken...but it can be fixed if we start voting for people who care to fight for what is right.

[colinmom71]

15. Yep, it can be crazy maze to find proper health coverage for special needs kids.

And there isn't exactly a lot of information made readily available for their parents either. I can think of two resources that may be their best bet.

First, as was mentioned above, is to apply for SSI for the child based on her disability status, though I would imagine the family has already done this. Income changes can prompt a change in eligibility status for SSI and that may be what has happened with this family.

Their second option is to apply for any of the varied waiver programs that states offer that relax the financial qualifiers in some cases, such as the Missouri Children with Developmental Disabilities waiver (MOCDD) which may be most appropriate for this family. The MOCDD sounds much like the waivers in other states that are called the "Katie Beckett waiver" or the "Deeming Waiver", where a child's medical and/or disabling condition would require the child live in a hopitalized environment if they could not receive home and community based services provided by the waiver access. Personally, I think the waiver program is this family's best bet since eligibility is pretty much solely based on the child's needs rather than income level.

We are probably one of the lucky few families whose disabled child has dual coverage - my husband's employer provided health insurance and Medicaid through the Deeming waiver. But funnily enough, we didn't even know for quite some time that we had that Medicaid coverage. The following will show you just how little info the state will make available to parents so as to save on costs.

Apparently, when my husband changed jobs several years ago, our income went up and so we were no longer SSI eligible which was expected. We also knew that his Medicaid coverage would cease. But we weren't told that we'd been switched over to the Deeming waiver coverage and that our son still had Medicaid coverage! We didn't find out until almost two years ago when our son had to have some eye surgeries and it was the *hospital* who discovered he has active Medicaid status! I argued with the nice lady as we were checking in for his pre-surgical exams, but she asked to let her process through Medicaid just to see if her records were correct. Yep, sure enough, we didn't have to pay even one dime because both our private insurance and Medicaid (as secondary coverage) paid for the entire surgery and hospital costs!

[Debi]

16. You have provided some great information

When my son lost his SSI coverage (due to my remarriage) we only learned about the Home and Community Based Waiver program (Katie Beckett waiver) through a local legislator. DHS nor SSA gave us any of this info. Crazy isn't it, these programs are created to assist those in need and then are locked away to ensure that nobody ever learns about them.