Grants? Waivers?

[Jodi]

I read in another post related to costs about DS about grants and waivers. I feel so naive... what grants? what waivers?

[lyndseysmom]

Each state has different grant and waiver programs. I’m in the state of Minnesota and the one grant that my daughter receives is the Family Support Grant. The maximum it pays per year is $3000. In the county I live in, there isn’t enough funding for us to get $3000 so we get a lesser amount. I can use this for things that insurance won’t cover like respite, educational items, special equipment, special dietary needs, and a few other things. I keep a list of everything the money gets spent on and hand it in at the end of the year. The maximum income to be eligible for this grant for the household is somewhere around $70,000. This grant is for families of children with certified disabilities under 21 years of age.

In my state there is also the Consumer Support Grant which is for individuals who have disabilities or chronic illnesses that require certain levels of care. This grant doesn’t have a limit on the amount you can get—the amount you get is based on the needs of the individual. The county I’m in has never done one. This grant is for individuals who have disabilities or chronic illnesses that require certain levels of care.

There are also waivers, but I was told that there is a three or more year waiting list. If my daughter didn’t qualify for medical assistance based on family income and she could get on a waiver, she would then receive medical assistance as well as respite, medical equipment, therapy items like a pressure vest, weighted blanket and many other things that regular medical assistance won’t pay for now.

We applied for these grants through Lyndsey’s case manager at our county’s department of human services.

Linda

[lespring]

I can tell you all about the Consumer Support Grant! Angela has been on it for 2 years and is just starting her 3rd. I also was required to attend a new training on it last week.

Minnesota is the ONLY state that has the Consumer Support Grant and there are only a few counties that offer it. Mostly in the 7 metro county area. There IS a limit to the grant. The max amount is $3,000 per month, but in order for a child to qualify at that level they'd need to be hooked up to just about every peice of machinery there is, require 24 our nursing care, etc.

The interesting thing about the CSG is for children who are medically fragile, or chronically ill, it is the ONLY grant in the country that allows the parent to be a paid caregiver. In Angela's case, this allows me to stay home since she is only able to attend school 1/2 days. (she's 10)

When she first went on the grant, she was medically fragile and could not attend school at all. She qualified for $1200/month, but they take 20% off the top for administrative fees and taxes, as it's considered taxable income for me. Because she's no longer considered medically fragile, her amount dropped in 1/2, and is based soley on her level I behaviors. (these are behaviors that are considered self-injurious, or injurious to others.) There is TONS of documentation that has to be provided in order to qualify for this grant. You must provide verification of all the needs from several different doctors, psychologists, school staff, etc. If the behaviors are only being reported at home, and school isn't seeing the same behaviors, you can't qualify for the grant. (in other words, no trying to cheat the system)

Under regular medical assistance, she qualifies for 6 hours per day (or 42 hrs per week) of PCA services....OR...I can take her budget amount ( which is significantly less and certainly not enough to live on) and stay home with her myself. At the moment I'm staying home, because we'd need 3 different staff to work with her because of a very high burnout rate. But I have until June 1st to figure this out. At that time we may go back to regular PCA and I'll go back to work.

[Jackie]

Emily in Texas is on the Texas Home Living program. It is a waiver program and provides her with $10 000 worth of services which she gets to determine. She is also in line for the HCS program which will triple the $$$ and will allow her some options in independent living. Most of Emilys money is now used for transportation and she has a young woman who drives her wherever she needs to go and also helps in her socialization.

It also pays for dental, and eyeglasses as well as some other things. But the good part is that Emily ahd her support system meet annualy to plan how it should be spent. This year we set aside quite a bit for a job coach..but so far wheels are moving slowly on this one...probably because Katie still needs her to help with the kids.

Jackie mom to Emily 26

[chasesmom]

Linda, here in Michigan there are several kinds of waivers also, depending on age, income and degree of disability.
There is the Family Support Waiver which allows each family that has income under 60,000 dollars a check of $222.11 a month to be spent on whatever is needed to help with the extra cost. I am not allowed this at the present time because my almost ex made over that ( how that has anything to do with the boys or I ..I dont understand) but I hope by July or August I can reapply for Chase. You are eligibe for this until your disabled child turns 18.

There is also the childrens medicaid waiver which Chase (thank the good Lord) receives. This has been the greatest gift for me. It is VERY hard to get, there is only 18 in our whole county with a huge waiting list. To qualify you must have SEVERE behavior problems as well as a developemntal disability, you must be a threat to yourself and others and unable to be managed without a caregiver at your side one on one. Chase more then qualifies for this and so I have an aide for him when shool is in session up to six hours a day and in the summer or during Christmas and Easter vacation eight hours a day. I also can ask for and get 14 days of vacation hours, which is 14 days of 24 hour care. This stops abruptly on his 18th birthday.
For adults, there is a adult benefit waiver which is for adults with hard to manage behavior much like Chase but over age 18 and they must have an income that is below poverty to qualify. It is based on their need for support due to behaviors, not due to disabilty UNLESS it is also because of medical issues, which I should have stated in the waiver Chase receives, that can also be gotten due to severe medical issues.

Those are the three here in Michigan, besides the obvious SSI which requires a very low income which is based on family income until you reach age 18.

I have always wished there was a grant which would allow access to conferences (it has always been a dream for me to attend the big national DS conference) or for the extra big stuff Chase needs like replacing the old fence to keep him here and safe or for extra speech and OT or PT, heck right now a regular pair of glasses would rock for him.
Hope this helped,
Robin, Chase's mom

[lespring]

Hey, I forgot about the Family Support Grant. Angela has been on it since she was 2. HOWEVER, I just found out that the county I'm living in you're not allowed to have 2 different grants, so I have to give one up.

Robin, you can use your FSG fund for the conferences! It counts under "goods, services and training". You can't use it for airfare and stuff, but you can use it for the conference registration fees.

[lyndseysmom]

Robin,

There are organizations that will pay for these items for you. You have to apply and provide some information about your situation to them. I haven’t applied for any of them yet, but I know of a few people who have received various things. If you want a list of them, I can email them to you. These organizations are set up to help families who don’t have other funding for the “extra things.”

Leah,

I don’t know if this applies in your situation or not, but I went through about 6 different people who were supposed to know the answer but didn’t, until I finally got the right answer. You can be on the consumer support grant and the family support grant, if you were on the family support grant first. If you are on the consumer support grant fist, you cannot get on the family support grant. Weird huh? I don’t know what their reasoning is in your county, but they may be incorrect, since most of the people I talked with didn’t seem to know the right answer to this. I might be able to dig up the lady I talked with who really knew her stuff.

Linda

[Chris]

Robin ~ How does Chase qualify for the family support subsidy? When I tried to apply I was told only children in an AI program, SXI or severe CI were eligible. Moderate CI did not qualify.

Sarah recieves Children's Special Health Care Services although we do have to pay a copay. It is well worth it since we recieve OT, ST and respite. We wouldn't qualify for anything if we didn't get CSHCS. CSHCS will pay for one parent to attend a conference. You can apply every other year. Parents with children who have rare disabilities are more likely to be approved although some years funds go unused because parent's don't apply. I went to the NDSC convention a couple of years ago and CSHCS paid for my convention fee, airfare, taxi to and from the airport and hotel (including taxes). They would not pay for meals. Maybe I will reapply for next summer's convention. You have to requalify for CSHCS every five years. Sarah's congenital heart defect has been repaired so that no longer qualifies her for services. She does have tubes in her ears so the covereage wasn't taken away from us.

Chris