TEFRA assistance

[mistylavon]

We live in Alaska and are in the process of getting Morgan set up on TEFRA. Which once she's approved it's goes back 3 months and covers all her med bills. It's based on the child's income and covers everything insurance does not and all prescriptions will be $2 and doctor co-pays $3. We're probably going to be moving in 1 1/2 yrs. to Denver area, we've also heard that the Denver CF Center is the top one. Does anyone else have this kind of coverage or know if there's something similar to this in Colorado?

 

[mistylavon]

We live in Alaska and are in the process of getting Morgan set up on TEFRA. Which once she's approved it's goes back 3 months and covers all her med bills. It's based on the child's income and covers everything insurance does not and all prescriptions will be $2 and doctor co-pays $3. We're probably going to be moving in 1 1/2 yrs. to Denver area, we've also heard that the Denver CF Center is the top one. Does anyone else have this kind of coverage or know if there's something similar to this in Colorado?

 

[debs2girls]

Sorry Misty, I have never heard of it but it sounds awesome...I hope you are in luck and they offer it in Co.

 

[debs2girls]

Sorry Misty, I have never heard of it but it sounds awesome...I hope you are in luck and they offer it in Co.

 

[anonymous]

<a target=new class=ftalternatingbarlinklarge href="http://policy.ssa.gov/POMS.NSF/517e83681a5eb8b28525688d0058721c/717035bfb79c0dbf85256e310077f5a0!OpenDocument">http://policy.ssa.gov/POMS.NSF/517e83681a5eb8b28525688d0058721c/717035bfb79c0dbf85256e310077f5a0!OpenDocument</a>

 

[anonymous]

<a target=new class=ftalternatingbarlinklarge href="http://policy.ssa.gov/POMS.NSF/517e83681a5eb8b28525688d0058721c/717035bfb79c0dbf85256e310077f5a0!OpenDocument">http://policy.ssa.gov/POMS.NSF/517e83681a5eb8b28525688d0058721c/717035bfb79c0dbf85256e310077f5a0!OpenDocument</a>

 

[anonymous]

<a target=new class=ftalternatingbarlinklarge href="http://www.chcpf.state.co.us/HCPF/MedicaidEligibility/mefcc.asp
">http://www.chcpf.state.co.us/HCPF/MedicaidEligibility/mefcc.asp
</a>but I don't know if the Children's waiver (in first column) applies easily to children with cystic fibrosis
-lisav

 

[anonymous]

<a target=new class=ftalternatingbarlinklarge href="http://www.chcpf.state.co.us/HCPF/MedicaidEligibility/mefcc.asp
">http://www.chcpf.state.co.us/HCPF/MedicaidEligibility/mefcc.asp
</a>but I don't know if the Children's waiver (in first column) applies easily to children with cystic fibrosis
-lisav

 

[mistylavon]

I found out the information I needed re: TEFRA. This is also known as the Katie Beckett Act. They do not offer this in Colorado. How do you all do it without extra help besides insurance? Do you just have great insurance coverage? I would think that if my daughter was hospitalized even 2 times a year and if more complications come along we would not have much extra, if any, after the insurance pays 75%. I'm not trying to be noisy or anything, I'm just trying to see the big picture if we decide to relocate and only having our basic insurance coverage.

 

[mistylavon]

I found out the information I needed re: TEFRA. This is also known as the Katie Beckett Act. They do not offer this in Colorado. How do you all do it without extra help besides insurance? Do you just have great insurance coverage? I would think that if my daughter was hospitalized even 2 times a year and if more complications come along we would not have much extra, if any, after the insurance pays 75%. I'm not trying to be noisy or anything, I'm just trying to see the big picture if we decide to relocate and only having our basic insurance coverage.

 

[anonymous]

look at <a target=new class=ftalternatingbarlinklarge href="http://www.chcpf.state.co.us/HCPF/MedicaidEligibility/mefcc.asp
">http://www.chcpf.state.co.us/HCPF/MedicaidEligibility/mefcc.asp
</a>The first column is information about Colorado's CHILDREN'S HCBS WAIVER
(formerly Katie Beckett). I don't know how easy/hard it is to get for a child with CF because it says
the child "must be at risk of nursing facility or hospital placement." and the child must need "Nursing facility or hospital level of care".
Also this table is based on 2002 information.
So you need to call whoever is now in charge of Colorado's Community Based Long Term Care Section/HCPF .
-lisav

 

[anonymous]

look at <a target=new class=ftalternatingbarlinklarge href="http://www.chcpf.state.co.us/HCPF/MedicaidEligibility/mefcc.asp
">http://www.chcpf.state.co.us/HCPF/MedicaidEligibility/mefcc.asp
</a>The first column is information about Colorado's CHILDREN'S HCBS WAIVER
(formerly Katie Beckett). I don't know how easy/hard it is to get for a child with CF because it says
the child "must be at risk of nursing facility or hospital placement." and the child must need "Nursing facility or hospital level of care".
Also this table is based on 2002 information.
So you need to call whoever is now in charge of Colorado's Community Based Long Term Care Section/HCPF .
-lisav

 

[anonymous]

another resource for Colorado
<a target=new class=ftalternatingbarlinklarge href="http://www.bvsd.org/downPdf/SpecialEdResourceDirectory.pdf">http://www.bvsd.org/downPdf/SpecialEdResourceDirectory.pdf</a>

 

[anonymous]

another resource for Colorado
<a target=new class=ftalternatingbarlinklarge href="http://www.bvsd.org/downPdf/SpecialEdResourceDirectory.pdf">http://www.bvsd.org/downPdf/SpecialEdResourceDirectory.pdf</a>

 

[mistylavon]

Thanks for all the helpful posts.

Lisav - Yes, I did find this. I called and we would qualify for that as long as we qualify in Alaska. Our TEFRA coordinator here said CF patients are receiving a hospital level of care, we're doing daily chores to hopefully prevent them from being in the hospital. Some states this only considers the child's income, not the parents. Right now there's about 100 kids on the waitlist in Colorado, so it's taking 4-6 months to get it.

Karen - Thanks for this information, you're so right, no expense is too high when it's a loved one. We're actually looking at Greeley, CO. The housing cost is fairly low, it's about 40 miles from Denver or so. The ped. pulmonologist in AZ said that Denver is the #1 CF Center there is. My husband is a surgical nurse and a few of the docs he works w/ are from that area and they say hands-down Denver is the #1 place in the U.S. for pulmonolgy. We live in Alaska now and it is a pretty high cost of living. We're from Oklahoma and wanting to be closer to all our family, but still were it's cool and not too hot and there needs to be good hunting for my husband. Our #1 this is good CF doctors for Morgan, but we need a good balance for our entire family.

 

[mistylavon]

Thanks for all the helpful posts.

Lisav - Yes, I did find this. I called and we would qualify for that as long as we qualify in Alaska. Our TEFRA coordinator here said CF patients are receiving a hospital level of care, we're doing daily chores to hopefully prevent them from being in the hospital. Some states this only considers the child's income, not the parents. Right now there's about 100 kids on the waitlist in Colorado, so it's taking 4-6 months to get it.

Karen - Thanks for this information, you're so right, no expense is too high when it's a loved one. We're actually looking at Greeley, CO. The housing cost is fairly low, it's about 40 miles from Denver or so. The ped. pulmonologist in AZ said that Denver is the #1 CF Center there is. My husband is a surgical nurse and a few of the docs he works w/ are from that area and they say hands-down Denver is the #1 place in the U.S. for pulmonolgy. We live in Alaska now and it is a pretty high cost of living. We're from Oklahoma and wanting to be closer to all our family, but still were it's cool and not too hot and there needs to be good hunting for my husband. Our #1 this is good CF doctors for Morgan, but we need a good balance for our entire family.