SSI Gripe

[sl_underwood]

I found out that before my son was adopted (while we were his foster parent) the state got SSI on him. We received a letter this past week stating that we needed to go to the social security office and apply to have the payments switched to our name so they would come to us instead of the state. Went there this morning and we were told while we dont make to much money to qualify we have to many assets and no debt. The woman we saw actually suggested we dump our emergency fund, take on a few credit cards and refinance our second car so our son could qualify. It angers me that because my husband and I are financially responsible, my son will not receive the extra help he needs. It also irritates me that the government is encouraging people to be in debt, live without a cushion, and stay below the poverty level. They are setting up people with disabilities to be homeless and destitute. The worst part about him not getting SSI isnt the subsidy but he will no longerqualify for medicaid (he received physical and speech therapy that he will no longer be allowed unless we can pay $600 each month for it) Have any of you ever had to deal with SSI, is there any way to get around this without going into debt?
Thanks

 

[KirstenB]

I know nothing about the SSI, I'm sorry. But our younger dd gets PT, OT and speech through the school system. Does your son get this? I know some friends of ours pay out of pocket for additional speech, because the school doesn't give enough.

 

[MightyMom]

What state do you live in?

In Texas there are medicaid waiver programs. Granted, the waiting list is 2+ years long.... but once you get into the program you child qualifies for medicaid and other assistance.

Look into any medicaid waiver programs your state has to offer.

Good luck!

 

[LauraVV]

Hi,

Social security payments wouldn't really help your child. They'd help you. You cannot save any of the money SS gives as payment. You have to keep your bank account under a certain level even on the day of the social security payment. So, if the payment is $500 and the max assets for SS are $2000 you have to have less than $1500 in your child's bank account. When you adopted your child did they offer a stipend? Did a medicaid waiver come with the adoption? I'd certainly look into those issues.

We are currently appealing SS denial for our son. He's 19 so his qualification is based on his income and assets. There are so many people who try to get benefits when they don't deserve it. That causes big troubles for those who really need the assistance. SS would allow him to hopefully live on his own for a while but it'll also really help us with his expenses until that happens.

 

[sl_underwood]

We live in OK and our son does get a very small amount of services through the school. He gets 30 minutes a week of physical therapy and another 30 minutes of speech. While in foster care, medicaid covered up to 2 additional hours of each plus 3 hours of occupational therapy. The therapists came out to our home and not only worked with him but also helped teach me, as I had little knowledge of how to aid him and encourage his growth in these areas. After the adoption, we were told we have 6 weeks in which to decide whether to cancel the services or pay for them ourselves. We will pay for them even if it does strain our budget because it is what is best for him. I just thought there might be something we could do to continue to have them paid for. As for the subsidy, we were told we didnt qualify because he qualified for SSI. Now that we know he doesnt, it is my understanding we can reapply for the subsidy (it will be around $200 each month) and he will get basic medicaid but it will not include payment for the SSI services such as speech, OT, PT, and we will have to find a new counselor or pay her fees as basic medicaid does not cover her services (attachment and bonding therapy) It just frustrates me that our family will suffer due to the fact that we choose to be responsible.

 

[LauraVV]

I'd check to see if medicaid will pay for therapy. In IL, they do. Therapists don't come to the home but you can get therapy. It's more of a convenience item than a necessity to have therapists come to the home. Therapy is not part of SSI. SSI does not pay for therapy. They just give a monthly stipend.

Does your primary insurance cover your child? If so, do they pay for therapy? Does your employer pay for counseling?

http://www.okdhs.org/programsandservices/dd/docs/waiver.htm
http://www.okdhs.org/library/policy/oac340/075/15/0128005.htm
http://www.okdhs.org/programsandservices/health/med/docs/elig.htm#eligibility

It stinks and I'm sorry. But things are better today than they were when I was a kid. My brother has fetal alcohol syndrome. My parents were not told he had this when he was adopted. They received no assistance at all. They still support him even though he's an adult. He receives no assistance at all and never has.

 

[dclfun]

In Florida, at least ( which is one of the worst states for assistance for the disabled) they do have insurance for children that I think is available in every state. The SCHIP program would pay medical bills and depending on his level of special need, in this state there's also Children's Medical Services which is health insurance for developmentally disabled children. While not offering a monetary stipend, they would at least pay for medical care and therapy. A friend of mine who is a physical therapist and makes well over any income limits adopted a child with spina bifida years ago and was able to get Medicaid included for her child until age 21 as part of the adoption agreement. I'd check with your state and also find out what happened to the SSI payments. One of our foster children years ago had SSI and we were told that a bank account had been set up for him, saving the payments for his future use. ---Kathy

 

[sl_underwood]

As long as he qualifies for SSI he will qualify for a special medicaid card that includes services like PT, but this is only if he gets SSI. Otherwise, he gets the basic medicaid which will only cover the preexisting conditions our insurance wont, like his 6 month MRI (he suffered several skull fractures before he came to us) and his yearly check up with the orthopedist (he had several broken bones when he came to us, one very close to a growth plate) Our insurance wont cover the PT, OT, and Speech as they believe it to be environmental and believe DHS should foot the bill. It was also discovered at the time of adoption that our son lived in a home where meth was cooked and was exposed to its fumes on a daily basis. Of course, this was hid from us until the last minute, DHS waited to give us his file, knowing we would read every page. I truly believe our child welfare system is corrupt and rarely serves the best interest of the child. I now know our social security system is just as bad. It amazes me that our government would set up its disabled citizens to be destitute yet that is exactly what these laws have done. I cant understand why the government would require that we not save but spend every penny and encourage debt that is unlikely to ever be paid. There is no way to win for those who must seek this help. Fortunately, we will manage regardless of the governments inability to care for the children who have suffered needlessly due not only to the injustice their parents brought to them but the injustice our government agencies have brought as well.

 

[dclfun]

With Medicaid Waiver and other special children's state insurances, his needs should be covered. Check out your "KidCare/HealthyKids" type options for the developmentally disabled in your state. Fight the agency that allowed him to be adopted without a subsidy and coverage which should rightfully be paid for by the state. In general it's even worse for adults who became disabled after age 21. We don't qualify for Medicaid Waiver and are expected to live in a nursing home if we have needs for a caregiver, etc. SSI is freely given to children whose parents coach them to do poorly in school ( then the parents don't have to work- they now have gtd income and can get Section 8 and other benefits). This is how the welfare rolls have decreased- now many single women who once collected welfare suddenly have a "disabled" child. I witnessed this rampant abuse when we lived in an apt. complex that allowed Section 8. These children will suffer by not ever getting an education- if their grades go up, they lose SSI and their parent(s) have no intention of ever working and supporting themselves. Meanwhile adults have great difficulty getting qualified for SSI or SSDI despite disabilities much more severe than "being behind a grade in school". It's disgusting and no one seems to care, esp. our politicians.---Kathy

 

[sl_underwood]

I agree with everything you are saying. It seems that the system only works for people who know how to "work" the system. So people who are genuinely good people but could benefit from a few services dont qualify. My brother in law tried to get food stamps while in college as he was paying his way through and working his butt off for the education. He was told he didnt qualify because he was going to college. Didnt matter that he was working 2 jobs just to make ends meet. Now if he had been a drug addict gang member he would have qualified for everything. How does that make sense? As for my son, we will reapply for the subsidy based on the fact he doesnt qualify for SSI. We will get a special tax credit this year for his adoption and use it toward his special therapy and will attempt to get the school to up his speech and physical and I intend to try to get them to communicate more with me so I can continue at home as well. We have 1/2 of what he received while in our home as a foster child saved in a special savings account and can access this as well. We will meet his needs, it just irritates me that our government programs really dont work for those who need them.

 

[barkley]

you might want to contact a shriner's hospital. even if there is'nt one in your area it might be worth it because if they believe your son could benefit from their services all of his care would be provided free of charge. they can help pay with transportation and have free or very low cost lodging available if you have to travel a distance to one of their facilities.

as for ot-call your local elks club. some elks organizations have programs (not based on income or any affiliation with elks) that provide ot and other theraputic services (my ds currently receives free ot in our home once a week through our state's elks).

 

[dclfun]

I wanted to also add that you might want to look into setting up a Special Needs trust- this way any income can be sheltered as it's to be used in the future for your son, so as not to limit him once he becomes an adult from receiving benefits or services based on income. Income in a SN trust does not count. Good luck with everything. We had SN foster children for years and it was always a fight to get them the therapy and services they needed while they were in our care. Fight I did....but it shouldn't be such a difficult task. My son, at age 22 and in renal failure since age 20 has been told he might not qualify for a kidney transplant as he has no way to prove he can afford the post-transplant meds. If he hadn't worked so hard beginning at age 17 he wouldn't have qualified for SSDI. If he hadn't qualified for SSDI, he'd have SSI which would entitle him to Medicaid, which would entitle him to have a transplant and post-meds paid for. So yes, people who don't wish to work are the ones our government helps.---Kathy

 

[sl_underwood]

barkley- Thanks so much. My dad is a shriner so I will talk to him about it. He may know of some services there. I will also check with the Elks. Thanks again!

dclfun- will check into the SN trust. That seems like it might be a good option. I want to have money available for him if and when he needs it. Sorry to hear about your son.