Susan's Blog

Monday, September 19, 2011

The Good of Medicaid and Social Security Programs

Very frequently I write about the federal government’s Medicaid and SSI programs, including latest news I take from and similar Social Security issues sources.  I am passionately supportive of these social programs, but I don’t often show you why.  What, exactly does a program like SSI (Supplemental Security Income) do for someone like Nat, with a significant disability?  The government’s own website states: “The Supplemental Security Income (SSI) program pays benefits to disabled adults and children who have limited income and resources.”

Limited income and resources.  It is no news that people with developmental disabilities are seriously under-employed.  Seriously.  Here is what Dr. Peter Gerhardt, Autism Guru, has found in his 30 years of work in the field of autism adulthood & transition:  “67% of families surveyed had no knowledge of available transition programs and settings; 83% relied on family members as their primary source of transition planning assistance; and 78% were unfamiliar with agencies or professionals that might assist in job development; only 19% of individuals with autism were employed at the time of the survey with 74% of those employed working less than 20 hours per week; 85% still lived with parents, siblings, or older relatives.”

Someone like Nat, if it came down to it, could live with his family, of course.  But the last time we tried that, Nat became very unstable and anxious, which led to outbursts of aggression and screaming.  Now, I love that guy with every cell in my body.  But I also love the safety of my family and I have found that other settings support him better. I was lucky.  I had options, mostly because I live in Massachusetts, which has some of the better benefits and supports for autism.  And mostly because I have the energy and time to educate myself about programs for Nat.  Many many others do not.

What about the multitude of others who do not have a family, or whose family has to spend significant resources getting help for their disabled relative?  Or who don’t have those resources, even?  A few months ago, I went to an Autism Focus Group that was all about developing recommendations.  Most of the folks in this group were adults with autism.  They were living on very meager incomes.  Many did not have cars.  Many did not have jobs.  Many lived with their aging parents.  One lovely and socially skilled young woman was trying desperately to find a job, asking me for any help I could give with my networks.

Usually the SSI check per month, for someone developmentally disabled, is around $700.  Your food and rent comes out of that and all else comes out of that.  You probably apply for food stamps, and also use whatever public transportation is available.  You also apply for the disabled person’s discounts that are offered in various places. That is, if you know that you have to apply, and if you are capable.  Perhaps your guardian will know.  Perhaps not.

Oh, and by the way, if you are on SSI, you are not allowed to save up the checks.  You can’t have more than $2,000 in your bank account at any time.  You need that money, every last bit of it.

So?  Get a freakin’ job!

This is the refrain of the ignorant.  Remember, you can’t have more than $2000 at any time.  If you earn more, you lose SSI, but you may qualify for a different program, SSDI, which I don’t know enough about to cover here.  And as for work, remember the unemployment problems in America.  We all know about the unemployment rate these days.  We all know about how any family struggles if they are jobless.  What do you think happens to the jobless who have serious or even moderate developmental disabilities?  The higher-functioning the individual, the higher the expectations; at the same time, they are eligible for fewer programs than someone like Nat.  They are caught in the middle of needing to work but not quite having the social wherewithal to convince an employer.  It is an employer’s market these days, too.

Having SSI qualifies you for Medicaid, which pays for insurance and other programs, like Day Habilitation.  DayHabs are usually the one entitlement these adults have.  They have a place to go from 9-3, M-F.  DayHabs have activities organized, and some even have the resources to go on outings and do volunteer work.  But many don’t.  Many rely on sheltered work within the facility.  They also rely on television.  And still, they are lucky to have that, to have professionals to care for their needs during those hours.  Medicaid pays for that.

How do these folks get caregivers and staff in their homes?

Medicaid has a program called Adult Foster Care.  If you qualify — and you need to demonstrate severe daily living skill deficits — you might be able to receive $9000-$18,000 a year which must go to the live-in caregiver.  If your disability is that severe, do you think it will be easy to find a qualified caregiver who wants to live with you, and earn such a low salary for such a demanding job?

Again, you are incredibly lucky if you qualify for that.  Many do not.  And many do not even know about it (see Dr. Gerhardt’s research, above).

How about housing?  Where do you live, on such a limited income?  Thankfully, this country has the Mobile Section 8 program that subsidizes your housing, which is utterly necessary in this day and age of expensive real estate and rents.  But here’s the rub:  there are years-long waiting lists for Section 8, and the disabled are competing with homeless families and seniors!

How about Project-based Section 8?  You can only get those if you are working with a service provider who can buy the house in the first place, or with a landlord who is willing to be a designated Section 8 landlord.  Or you buy the place yourself.  But remember what your monthly income is…

So?  It’s not my responsibility!  Let private organizations help them instead!  Government is too big!

This is what many in the Tea Party and other groups say.  It is simplistic.  We all benefit from the large military and roads.  We all benefit from federally protected banks, public education.  Those are big government programs, too.  You can’t have it both ways.  And as for relying on the private sector and charitable institutions, you have to think this through:  If private organizations could do it, they would, but how can you if you have to rely on the ups and downs of individuals’ ability to donate, in this economy?  And what if one organization makes rules that are skewed to favor some and not others?

But there’s so much waste in those social programs!

Really?  Do you know how much waste there is?  Where are the statistics and studies on that?  Show me how a typical DayHab wastes its money.  Show me how easy it is to get SSI, if you don’t meet the requirements.  and do you know how scrupulously they monitor your bank account, month after month?  I know this as Nat’s guardian, from personal experience, that they look very closely.

We all need to look closely at the sweeping generalizations we hear from politicians.  You can go and see the good of these programs with your own eyes.  Find a DayHab near you and visit it.  Talk to an adult living on SSI, and find out the facts.  It is possible to piece together a life with these programs and help from family, but without that, you have lives falling to pieces.


Did Nat only qualify for SSI after age 18? I was told that a minor child could not qualify for SSI if a parent’s income was too high.

— added by Lisa on Monday, September 19, 2011 at 12:35 pm

I think so. But we applied when Nat turned 18.

— added by Susan Senator on Monday, September 19, 2011 at 12:52 pm

Here for ODSP you can’t have more than $5000 at any one time and any extra has to be in a Henson trust where the trustees control the funds and dole it out at their discretion. We can apply when our youngest turns 18 and since he already has ACSD (children’s version) and developmentally disabled is on his IPRC (school paperwork), he already qualifies at not quite 10.

I think you’ll find the “tea party” group more annoyed over the refusal to find out and be part of, than the actual spending of the resources. The refusal by many to set up those trusts, to save those funds, for their disabled children’s adulthood. That scream how we should go back to residential facilities instead of trying to get a group together of like minded parents and lobby for funds and make up a non-profit to run it or ask an existing non-profit for help (many have been building seniors facilities, maybe they’ll do disabled ones) since they can access other monies and be on the boards (like Comm Living) and become part of the process. As one “on the right”, those things annoy me since we’ve been doing both. I have no respect for the 75% out there that refuse to do and expect to have someone do for them. My eldest son’s EA that vanished once more to a child who’s parent didn’t “do” but do to our “doing” mine’s coping and not getting the resources he’s entitled to… is not right… EVER.

I have been part of our Comm Living since our children were small. I plan to start attending meetings when my youngest turns 13. I am, and will be part of the process. I will continue to build resources to the best of our ability to contribute to my son’s ODSP monies.

And… I don’t sympathise for those that won’t. It takes hours, and a lot of stress… why shouldn’t everyone have to invest the same resources??

— added by farmwifetwo on Monday, September 19, 2011 at 1:08 pm

We, too, in Massachusetts must make special needs trusts in order to get our children anything supplemental.
Are you really saying that you believe that many many parents “refuse” to set up trusts or to save for their children? How do you know that? Do you think that they are lazy or something? Maybe it’s more that they are worn out from taking care of their disabled loved one. But isn’t it true that not everyone is as strong as you or me?

And please help me understand how the GOP was more annoyed about the refusal to find out about programs, than the actual spending on those programs, when the past few months the President was trying to get them to raise taxes on the rich? Taxes that would pay for all of the programs you’ve mentioned? Boehner and the rest of them simply refused to spend, period. To not spend for the sake of not spending. That is just plain wrong.

— added by Susan Senator on Monday, September 19, 2011 at 1:17 pm

We’ve come a long way since the 60’s, with Section 8/Sec.202 grants from Jimmy Carter and George Romney’s HUD/HEW collaboration to Massachusetts’ “final” official closing of Fernald after its first community residence, Prospect House, opened in 1969 or so. But stigma continues, and NIMBY is still a factor in siting.
The most important factor is financing; and that has to do with the manner in which we consider our tax system to be the basis for the infrastrucure which supports the opportunity for ALL citizens to enjoy life, liberty, and the pursuit of happiness.
We must continue SSI, Medicaid in a properly administered, equitable manner.

— added by Robert F. Marcus on Monday, September 19, 2011 at 3:27 pm

farmwife, I actually know a founder of our local Tea Party, though I did tell him and his mother (who was how I know him) that I couldn’t be their friend anymore three Yom Kippurs ago (yes, not quite the Yom Kippur spirit of forgiveness but nevertheless, the result of a lot of soul-searching). I assure you, these people are against spending ANY public resources for ANYONE under ANY circumstances.

Susan, thank you for this outline. I am going to print it out and save it for the next time I hear these arguments from others (it’s not easy living in Red America).

— added by Ohio Mom on Monday, September 19, 2011 at 7:23 pm

The people who run our government care more. about Big Pharma, Big Bankins, and waging senseless wars than they do about people like Nat. There could be plenty of funding forthe type of programs that would benefit your son and enough left over to fix our decaying roads and bridges and create a world-class passenger rail service if certain programs like Homeland Security were overhauled and tax breaks were eliminated for the ultra-rich, but that’s unlikely to happen.

— added by Sunni on Tuesday, September 20, 2011 at 10:12 am