So happy for you, HImom!
It’s a major accomplishment to outlast all the impediments that are thrown at you while trying to obtain what you are eligible for and for which you have already supplied the correct documentation numerous times!
Your daughter is so lucky to have you in her corner.
Our DD is also so fortunate to have my excellent health benefits tho past 26.
Health insurance past the age of 26 is the only benefit we’ve sought and obtained for D as a disabled dependent. We are very relieved to have it and OK with paying all her other expenses; the policy is particularly good in that it allows her to get care pretty much nationwide – cheaper in network but will even be somewhat compensated out of network. I’m glad to be able to help D–she’s had to bear more than enough over the years without having to fight bureaucracy.
My son went to Texas with me for two weeks. Ahead of time, we requested 17 days of meds. The pharmacy packaged them up and S took them regularly. I just got the latest monthly pharmacy bill, and it was for $484!!! They counted those meds as being asked for too soon, so MaineCare didn’t pay for any of the cost! The bill said that my son authorized the charges, but he did not. A nice woman at the pharmacy looked into it and said a staff member at his house authorized it. 
The woman is going to call MaineCare to see if they will pay for it retroactively. She doesn’t have much hope the state will pay, though. I guess I should have thought of this, but I didn’t. It would drain my son’s small savings account, and we aren’t in a position to pay it for him. Sigh. There’s always something I haven’t thought of.
Maybe the pharma will cover it under compassionate care?
Our love insurance allows us to pick up extra Rx for travel. If call the insurance company and explain the situation and ask for a travel waiver.
Yes, next time I will think to call ahead first! It just wasn’t on my radar.
The house manager told me that nobody authorized the expensive meds. The staff member the pharmacy claims authorized them does not work when the pharmacy is open! If they don’t come up with a good resolution, I will protest.
Between the pharmacy and the insurer, they should be able to waive this, especially since it’s a Med he’s always on and he was just taking it as usual, not taking an extraordinary amount of the Med. Don’t let them bully you!
@HImom, thanks.
When you call insurer and pharmacy, try to get full name, email and contact info of any helpful person. They can vary a lot! Sometimes it is helpful to go in person, sometime via phone works. Let them know it is unacceptable for you to have to pay an exhorbitant amount for his regular meds at the regular quantity just because no one advised you to mention it was for travel at the time the Rx was filled. The insurer has the power to waive the fee and certainly should.
Just be polite and persistent and keep going up the chain at the insurance company.
As Himom said, you will find the magic person who can and will reverse this purely clerical error.
I spent all day today trying to find a real live special needs attorney to speak with or even set up an appt for next tues. Everyone apparently had started their holiday weekend.
Realizing at the last moment that we could be causing our DD to lose government benefits by paying for her rent.
The rules are so convoluted I’m pretty sure we need a legal opinion on this.
Anyone know of a state that is actually opening ABLE accounts for anyone from any state NOW?
Best I can tell, Nebraska will open June 30, Ohio July 1.
The ABLE acct might solve our issue. Nj isn’t open till Oct, but any states plan would work.
Cheerful persistence and the unfailing belief that your position is reasonable and surely the one the insurance company means to take is IMHO invaluable, having survived many wrangles with insurer and generally been happy with the outcomes. Agree that if needed, go up the chain with insurer, speaking to supervisors as needed.
@musicmom, http://www.ndss.org/Advocacy/Legislative-Agenda/Creating-an-Economic-Future-for-Individuals-with-Down-Syndrome/ABLE-State-Bills/ is the best link I can find about current status of ABLE legislation throughout the US. It doesn’t unfortunately detail whether any states allow you to open accounts at this time.
You may wish to contact any national companies where you hold investments, like Schwab, Fidelity, Vanguard, or national banks to see if they have more info, if they plan to allow ABLE accounts they may know which states are currently allowing accounts to be set up. State disability offices may also have information about ABLE accounts and whether they can be opened in their states at this time. Our D is over 26, so wouldn’t qualify. She doesn’t have any benefits based on income or assets to protect anyway at this time.
@HImom, thanks, that’s a great link. You’re right though, actual availability dates of the accts is lacking.
I like hour idea of trying fidelity or vanguard. I hadn’t thought of that angle!
We used a 529 to help send our DS through college. It seems cosmically fair that we’ll now have an ABLE 529a acct to help his sister through life. Our DD is developmentally disabled since childhood. She only became qualified for SSI and Medicaid at age 18. The SSI is helpful but certainly not enough to actually live an independent life on.
It’s the Medicaid that gets her support services that might grant her access to work and independence. The ABLE acct will let us help without making a mess of things.
Each family’s situation is so unique.
Appreciate the help I receive here as I muddle through.
Can you post whatever you learn so others can benefit? I’m sure many others would like to start an ABLE account ASAP too.
It does sound like ABLE may be expanded so that folks disabled before a higher age than 26 may be allowed to have an ABLE account, IF Congress decides to amend to expand.
It appears Georgia has ABLE accounts. http://gcdd.org/images/Blogs/2015/Georgia_ABLE_One_Sheet.pdf
@musicmom how does Medicaid help, exactly? I have my child (age 21) on my medical insurance so have not looked into Medicaid. They are in appeal for SSI (applied at age 18 and denied- still working that original application date), and were denied also by Dept of Rehab. SSI thinks they are able to work; DoR thinks they will never be able to work, so will not qualify them for DoR services.
Medicaid benefits can vary greatly by state. Here’s the link listing possible benefits. We also just have D on H’s insurance policy and haven’t applied for or explored any additional benefits.
https://www.medicaid.gov/medicaid-chip-program-information/by-topics/benefits/medicaid-benefits.html
@HImom- I can see Georgia has passed ABLE legislation but not that they’re actually opening accounts yet.
Best I can tell is still Nebraska then Ohio.
Here’s a pretty good link. In red are all states that have PASSED legislation.
Notable few that have NOT. Shame on them!
http://www.thearc.org/what-we-do/public-policy/policy-issues/able-legislation-by-state
@ItsJustSchool - benefits of Medicaid are state specific. We’re in nj.
Our DD is fortunate to be allowed to stay on my excellent health coverage.past age 26. So medical benefits if Medicaid are prescription coverage with no copay.
BUT Medicaid gets her a “supports” budget that we use for her day classes, support, programs, that we can select from lists of approved providers. Alternately, she could attend a standard traditional day program…Not appropriate for our DD. Without Medicaid, she’d be sitting at home watching tv.
in NJ and also dually insured with private (great) insurance and medicaid…
medicaid essentially pays for a host of services that private wont-in our case it covers private duty nursing, DME supplies, any equipment purchases that have a balance from private (this can be significant) day program, all copays, and a variety of other things. i’m pretty sure we even have a small OTC benefit as well–tylenol, benadryl, etc can be covered. it can also cover home health aides and in some cases pay parents a small stipend as a caregiver. the benefits of medicaid are robust.
i absolutely advocate for a disabled person to apply for medicaid. if they have good insurance it can be helpful. if they have lousy or no insurance it can make a significant difference in their lives. even with our great insurance, the remaining out of pocket costs would bankrupt us.
all i know is, i’ve never met anyone who complained that they were * overinsured*.
@kac425 , thanks for that complete response. Really does point out why it’s worth the often considerable effort required to obtain coverage for a disabled family member.