MM ?: Parent SAH to care for chronically ill child

[Cheerio]

My DS was recently diagnosed with idiopathic hypercalcemia of childhood, which basically means he has high Calcium levels in his blood. He requires shots four times per day to control his levels and he is also being fed through an NG tube. We were told by Infant Toddler Services through our county that we would most likely not be able to find a daycare provider that would be willing handle his care. He also requires blood draws every other week and has other appointments he must attend.

DH is staying at home with him and has been since we relocated in February, although, prior to DS's diagnosis, he was planning to start looking for a job this Fall. The choice of whether to work or not has now been made for him - he will, for the foreseeable future, need to stay home to take care of DS.

Someone mentioned to me that there may be a tax break or other financial assistance since DH must stay at home with DS. Does anyone know of any programs or tax breaks for this kind of situation?

[ijack]

You might ask on the special needs board, but I know our neighbor got her CNA license so that she is able to collect a small income while staying home with her special needs son. Do you have a social security or medicade coordinator? they might know as well.
If you do want your husband to work, having a NG tube isn't always a deal breaker with child care providers. I don't know how large of a town you live in, but most large cities have special needs care.

[aurora]

Unfortunately I don't know anything that would be of practical help to you but I wanted to say I'm sorry your son is having a rough time and I wish your family the best.

[karinothing]

Depending on your household income you child may qualify for SSI benefits. I would contact your local Social Security office to ask. I am sorry you are going through this.

[Cheerio]

Aug 6, 2012 9:34:46 GMT -5 ijack said:

You might ask on the special needs board, but I know our neighbor got her CNA license so that she is able to collect a small income while staying home with her special needs son. Do you have a social security or medicade coordinator? they might know as well.
If you do want your husband to work, having a NG tube isn't always a deal breaker with child care providers. I don't know how large of a town you live in, but most large cities have special needs care.

Thanks for your response. I live in the Kansas City area, so I was surprised when our county services told us it would be difficult to find a daycare that would take him. However, DH and I have talked and have decided that him staying at home is probably for the best. I was just wondering if there were any programs I should be looking at for help.

We don't have a Medicaid or SS coordinator. Is this someone we should have worked with at the hospital? They asked us if we had concerns with the financial portion of his medical care and I said no, as we can afford to pay the bills.

[statlerwaldorf]

I know someone that has a daughter that requires around the clock care. She gets benefits through SSI for her daughter, but they are also low income. I would ask his doctor, ask a social worker, and see if you can find any support groups. You might want to look into any help you could get with medical costs as well.

[vanillacourage]

YGPM

[EmilieMadison]

I dont know about a tax break, but your son may very well qualify for SSI benefits. If so, then that may off set some of the costs of losing income to care for him.
Contact your SS office to set up a meeting to determine benefit eligibility.

I'm sorry your little guy is having a rough go But it sounds like he's got some awesome parents to help him through it.

[Cheerio]

Sorry to everyone if I gave the wrong impression.

We are not looking for handouts. We are fortunate in that we can afford for DH to stay at home and had been considering it before DS's diagnosis. We are not low income and would not want to take any money that could be put to better use, as we have good health insurance and can afford our current lifestyle on my income alone. I was more looking for additional tax breaks and things of that nature.

I appreciate all the kind comments. We had a very scary hospital stay with DS but he is doing much better now.

[ijack]

I take it he's a newborn? Let me do a little research and get back to you.

[ijack]

also, do you live in KS or MO?

[Cheerio]

Aug 6, 2012 11:20:34 GMT -5 ijack said:

also, do you live in KS or MO?

I live in Kansas, but he's not a newborn. He's 14 months old.

[dr.girlfriend]

What division is he being primarily treated through -- metabolics, or endocrinology? They should have a social worker assigned to their department, or if not can connect you to a hospital social worker who can probably help you with that stuff. So sorry to hear the news, it sounds very stressful. Hope your little one thrives.

[ijack]

It doesn't look like SSA provides assistance for SN in KS, but I would still recommend you apply for medicade. You might not need it now, but it's a good thing to have in place should something happen.
www.kdheks.gov/its
kckps.org/sped/infant_toddler.php

[Cheerio]

Aug 6, 2012 11:26:02 GMT -5 dr.girlfriend said:

What division is he being primarily treated through -- metabolics, or endocrinology? They should have a social worker assigned to their department, or if not can connect you to a hospital social worker who can probably help you with that stuff. So sorry to hear the news, it sounds very stressful. Hope your little one thrives.

He's being treated through nephrology. I will check with them.

[Cheerio]

Aug 6, 2012 11:41:26 GMT -5 ijack said:

It doesn't look like SSA provides assistance for SN in KS, but I would still recommend you apply for medicade. You might not need it now, but it's a good thing to have in place should something happen.
www.kdheks.gov/its
kckps.org/sped/infant_toddler.php

Thanks for the links. He's already been evaluated by Infant Toddler Services of our county and an Occupational Therapist will be coming to our home to work with him on eating for free. Other than that, he has no additional developmental delays that would necessitate assistance.

[karinothing]

I certainly didn't think you were looking for a handout. SSI is there for kids for a reason. It isn't shameful. It can also open you up to other services and medicaid (if you ever need it).

[ijack]

Your OT should be able to offer you some direction too I think. Unfortunately I don't know anyone that receives services in KS, so I'm not much help

[jewel]

If he qualifies for Medicaid, he may be eligible for daily nursing care, paid completely by Medicaid. Many people use their nursing hours as private, in-home daycare.

If you haven't already, check around for daycare facilities for kids with significant medical needs. They can be paid privately, or by Medicaid. They are fully staffed by nurses.

Also, have you called your county office to ask about aid? Try a department like Health and Human Services, Welfare, or Social Services. As PP said, in the state of CA, a child with those types of needs can qualify for in home care hours, which can be paid to a worker, or to a parent who cannot work because the child's needs. It's possible that your state has a similar program.

Try asking the infant program and your pediatrician.

Sorry I couldn't be of more help. Services vary SO widely by state. Come to California and I'll give you the full hook-up :-)

ETA - In my area, there definitely are regular day care facilities who are willing to accept kids with medical needs. They are not common, but they are out there. I've seen kids with g-tubes, trachs, and more at small in-home day cares. I wonder if state licensing regulates medical care in day cares in your state?

[ijack]

here is some more info
Kansas City CYSHCN Field Office:
Children and Youth with Special Health Care Needs
Center for Child Health and Development, Room 1005
University of Kansas Medical Center
3901 Rainbow Blvd.
Kansas City, Kansas 66160-7340
Phone: [phone]
Fax: [phone]

Kansas Resource Guide is a toll free help line answered from 8 AM to 5 PM, Monday through Friday on regularly scheduled work days. An expanded listing and range of services available in Kansas is available at this site. The Web site provides links to preventive, diagnostic, ongoing life time care and community resources for Kansans with and without a disability. If busy, your call will go to voice mail. Please speak clearly leaving a short message with your name, who/what you are calling about and a phone number with area code.

Toll Free: 1-800-332-6262

An email address to post questions is available at: [e-mail].

[niq]

You and H can both use FMLA leave to take (unpaid) time off to care for a relative with a medical condition -- including -- up to 3 months out of every 12 month period. So that would cover half the year but at substantial income loss.

Be sure to max out your FSA if you or H's employer has one. If you itemize your returns, you can itemize many of your out-of-pocket medical expenses up until some limit, and google "IRS publication 502" for the gory details.

[whitepicketfence]

No advice but I wanted to express how sorry I am that you are having to deal with this. I wish you and your son the best.