Just in case anyone is actually reading this...

Kristi Myers

Kristi Myers
State College, Pennsylvania, USA
January 03
Freelance Commercial Writer and Consultant
Hieroglyph Communications
I am a "thirtysomething" Mom and freelance writer raising the most incredible 9 year-old on the planet. Work (when I could get it) is writing technical manuals, marketing materials and grant requests for clients ranging from small nonprofit agencies to large national corporations. I just finished my Master of Arts in Education, an accomplishment that qualifies me for not much of anything in this economy. I love working with children and spend my days supporting kids with disabilities. I lie about my age. I just want to be happy. And to win the lottery.


Editor’s Pick
JANUARY 7, 2009 1:15PM

We became "poor" to help our daughter

Rate: 74 Flag

We have the most beautiful little girl in the world.  She is smart, funny, confident, talented and wonderful.  She is a blogger, a clothing designer, and a prolific artist.  And she is all of these things in spite of impossible beginnings that should have ruined all chances of reaching her potential.

 Our Genevieve was born at 25 weeks gestation in November, 2oo2.  For those who are counting, that is about 15 weeks - or more than 3 months - to soon.  She spent 3 months and 1 week in the NICU, relying on oxygen and a feeding tube for most of that time.  She had a severe brain bleed, multiple deadly infections, and other problems that are described in thousands of pages of medical records.

We met Genevieve on February 12, 2003, just 2 days before she was released from the hospital.  Before we could even hold her, we had to sit with an adoption lawyer, review the damning medical files, and sign a paper saying that we would be her parents forever.  The first moment I laid eyes on her, I was terrified because she couldn't even take a bottle without forgetting to breathe.  Her arms were slack at her sides, and no amount of stimulation could keep her awake for more than a few minutes.  She was 3 months and 1 week old.

And she was so beautiful.  She had these big blue eyes that filled her little face.  Her skin was smooth and perfect.  She looked like a porcelain doll.  We fell in love with her from the first moment we held her. 

We brought our Genevieve home.  We signed her up for home-based therapy, found a pediatrician, and checked in with a pediatric opthalmologist.  Time passed, and we enjoyed every second of parenthood.

Then, when Genevieve was about 15 months old, an Early Intervention evaluation showed that we she was about 50 percent delayed.  That meant that she was functioning like a 7 or 8 month old.  She wasn't walking.  She wasn't babbling.  She couldn't sit up or crawl very well, and she couldn't feed herself.  It broke our hearts.

At the time, I was working full time as the Director of Development for our local Arc chapter.  (The Arc used to be called the Association for Retarded Citizens, but had long since dropped that name in favor of the less descriptive and less insulting "The Arc.")  My Mom was babysitting Genevieve, because her immune system was too fragile for group child care.  Mom was running her to monthly pediatrician appointments, inviting therapists into her home for regular early intervention services, and learning what she could about preemies.  Meanwhile, I was working 60 hours a week and, with my husband, making just enough money to pay the bills.

But Genevieve's evaluation scared the hell out of me.  Clearly, she needed more than we were giving her.  A 50 percent delay is huge.  It could mean Cerebral Palsy, mental retardation and a host of other problems, each with their own acronyms and scary prognoses.  We knew that she was at a high risk for all kinds of problems, so this wasn't a surprise.  We couldn't change what had happened before.  But we had to do something to change Genevieve's future.

 So I quit my job.  Our income went from  $75,000 per year to $35,000 per year in a day.  Suddenly, we  were a lower income family, making less than we needed to survive.  I knew that we needed more money, and more services, to get by.  I called the Social Security Administration.

They gave me an appointment one month in the future.  I needed that time to compile dozens of reports and hundreds of pages of medical records to prove that Genevieve needed help.  We were lucky, because somehow Genevieve was approved for SSI (Supplemental Security Income) on the first try.  Most people are rejected over and over, needing attorneys and appeals to get the help they need.

But there was one little problem.  Before we could access the benefits, we had to spend our entire savings account and cash in life insurance policies to make ourselves poor.  You see, a family can only have about $3,000 in total resources and still qualify for SSI for their dependent child.  We had $8,000 in the bank - money from our last income tax refund.  They told us to spend it.  So we did.  We spent our safety net.

Finally, after about 5 months, Genevieve qualified for about $400 a month in SSI, plus the magical Medical Assistance card.

Now, the cash was helpful, because it replaced some of my income and helped us make ends meet.  But the MA card was like gold.  At the time, Genevieve was receiving 2 hours per week of Speech Therapy, 2 hours per week of Occupational Therapy, 1 hour per week of Physical Therapy and other services that everyone agreed would be her best shot at catching up.  Without MA, these services, not covered by our private insurance, would have cost us about $4,200 per month.

 "What?"  I can hear you asking the question.  "Surely you must be joking."  I am not.  This wasn't funny at all.  Had I continued working, we would not have been able to afford even half of the services our daughter needed to catch up.  I had to quit, and we had to become poor.

SSI has monthly income limits, and if you exceed them, your check and Medical Assistance benefits dry up.  But if we stayed below the threshold, Genevieve could have uninterrupted assistance for 3 years.  We figured that was just enough time to get her on track.

Oh, and did I mention that, from the age of 15 months to 4 1/2 years, she awakened screaming dozens of times each night?  That was fun.

So we got our income down to about $33,ooo per year.  I started using WIC checks to pay for Genevieve's expensive, high-calorie formula.  (We could no longer afford the $80 per week to pay for it ourselves.)  I had to flash a bright yellow Access card to cover medical services.  And I suffered through excruciating calls to the local Social Security office.  (Luckily, these calls were infrequent because our lazy, incompetent clerk rarely returned my calls.)  Twice I was accused of fraud and ordered to repay every penny of SSI that Genevieve had received, and I spent dozens of hours filing appeals and explaining how we could not repay the money because we had been ordered to spend all of our savings.  At one point, I had to justify our cars, which were needed to take Genevieve to appointments and get my husband to work.  (One SSA clerk told us to sell our car to repay an "overpayment."  The car was 12 years old, and I had to justify our right to keep it.)

I really began to understand how people receiving Public Assistance are wrongly stigmatized.  People looked at me with such contempt when I presented my WIC checks, rolling their eyes because they knew I would hold up the line.  Parents at the doctor's office would shoot me weird looks when I explained Genevieve's insurance coverage to the clerk at the window.  I had to beg, borrow and steal to get the expensive leg braces replaced every three months instead of the allowable two times a year, because Genevieve was finally growing.  (At the age of 1, she weighed 12 pounds and the doctor was going to classify her as "failure to thrive.")   And I had to jump through hoops to prove that I was my daughter's Rep Payee when I tried to deposit her SSI checks into our account to pay the bills.

There were hundreds of times when I was humiliated, questioned and judged by providers, government workers and people on the street.  A "friend" even commented that the government spends too much money to save babies who are a drain on the system.  (I extracted an apology and made him feel like a real shit, I can assure you.)

 Finally, when Genevieve was 4 1/2 years old, she started to catch up. The services were discontinued because she didn't need them anymore.  We gradually gave up OT, PT, and Speech in favor of home-based counseling and Therapeutic Staff Support to help her cope at home and in preschool.  She began to show us her extraordinary gifts, and we saw that she finally seemed to enjoy living in her own skin.  Things had turned around, and we were so grateful.

Then I was offered a great part-time job at a local non profit agency.  We weren't out of the woods, but we could see the path that would lead us home.  I took the job and increased Genevieve's home-based counseling to address her anxiety about being left with a babysitter.  I did as I was told and called the Social Security office to let them know that I would be returning to work in June.  Everything was looking great.

And then, at 5pm on a Friday, my second day of work,  I got a call informing me that all of Genevieve's benefits had just been cancelled, effective immediately.  Her services would end that day, because I would eventually get a paycheck.  They took away her benefits before I saw a penny from my new job, and did so in a manner that almost lost me my job.  You see, Genevieve also has a serious anxiety disorder that made it nearly impossible for her to separate from us, her parents.  For her, seeing me leave for work was terrifying.   We relied on the counselors and therapists to help us get her through the transition.  Without their help, I had to consider quitting my job after only two days.  It was all terribly ironic, because I did not see a paycheck until almost a month later.  Technically, we were still qualified for benefits until we exceeded the income guidelines.  But that didn't matter to the computer.

Well, I yelled and screamed and wrote letters and got the benefits restored under a different funding stream.  The services continued, and I kept my job.  We made it through, and we managed to save money again, without the Social Security Administration breathing down our necks.

But I learned a lesson, and it helped me understand how people can be beaten down by a broken, unforgiving system.  When you need help, you are treated like a criminal, with so many traps to catch you when you aren't doing anything wrong.  One misstep, and you lose everything.  And when you finally try to better yourself (by getting a job, for example), they yank the safety net right out from under you before you can find your footing.

So, we made ourselves poor in order to give our daughter the future she deserves.  Given the chance, we wouldn't change a thing.  Now we have this exceptionally talented, loving, articulate little girl who can do anything.  She is so smart that we can't keep up with her, and she is a blessing to everyone who meets her.  And you know what?  She not only caught up - she left her peers in the dust. 

 So sure, we used public assistance to help our daughter.  We took taxpayer money to access services and supports that we could not otherwise afford.  And we are glad we did it.  The government money spent was really an investment in our child's future.  Now she really will reach her full potential.  And when she does, you watch out.  She is going to be fantastic!

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What an incredible true story. I have also dealt with bureaucracy to help my brother, who suffered from schizophrenia, and my mother who has dementia, and I can attest to how soul destroying and diminishing of self it can be. Your endless battle required tremendous strength and courage. I am happy that it turned out so well for your daughter.
"Soul destroying and diminishing of self" is a perfect way to describe it. You found the perfect words.

I know that the government has to put controls in place to ensure that the people who get help are the ones who truly need it. But there must be a way to do that without demeaning and breaking the people who ask for the help.
But I learned a lesson, and it helped me understand how people can be beaten down by a broken, unforgiving system. When you need help, you are treated like a criminal, with so many traps to catch you when you aren't doing anything wrong. One misstep, and you lose everything. And when you finally try to better yourself (by getting a job, for example), they yank the safety net right out from under you before you can find your footing.

this is something we all need to know and recognize. everyone needs help in some way, at some point, and it is criminal to make it so difficult and awful that many people don;t even try to get assistance. good for you for doing what was best for your daughter and fighting for her every step of the way.

brilliant post

A beautiful, beautiful story. I'm so glad that your daughter is doing so wonderfully (is that a word?). I can relate as we went through something similar, though not nearly as intense, with your youngest. It took me a while to get over my embarrasment at using Medicaid and other government services. Finally I realized that my husband and I had worked and payed taxes for many years, and that we had every right to (legitimately) use the benefits of the system we had supported for so long. In the long run, the fact that our children will be functioning members of society instead of shunted away in an institution or back bedroom is well worth the cost.
Thanks, kmbearden, for the comments. We do need to remember that our draconian was of doing the business of helping people is keeping us from helping anyone at all. Now if only the government would see it that way.
Amen to that, CarmellaS! It stinks that we have to do this to help our kids, but Thank God we have the knowledge and skills to get the services they need. I often wonder how people with less information, less strength and less self-confidence even manage at all.

You are right - we paid taxes for years - and we still do - and it is not wrong to ask that some of that money be invested in helping our children. After all, doing so will make them productive, tax-paying citizens in their own right someday. And who can even guess at what wonderful things they will contribute to society when they reach their full potential?
That sounds like a nightmare! I have such admiration for everything you did and sacrificed for Genevieve!
Aw, Thanks, D! But I just did what anyone else would do. How could a person NOT move mountains for their child?
Wow, Kristi. Heartwarming and infuriating. If I wasn't so happy for you, I'd want to bang my head against the wall.
Yep, my brother's in the same boat. If he earns 1$ too much in a year, he loses 40-50k$ of benefits and it would require two years of fighting the bureaucracy to get them back. Now that the economy has tanked, he has no chance of earning too much, but once his income required careful scrutiny. All the agency that help the handicapped are aware of this and will adjust hours.

As a side note, ARC was named when "Mentally Retarded" was the non-insulting medical term for what is now called developmentally delayed. But then "retard" entered the lexicon as an insult and the word is now insulting. I presume some variation of developmentally delayed will one day become an insult and we will have to coin a new term.
great post. it takes way more courage and tenacity to negotiate the system like you did than people realize.

your daughter is lucky to have you!
Love and relentless commitment can move mountains.
One measure that keeps the cycle of poverty alive is the clause about not being allowed more than a certain amount of 'assets,' to reduce your circumstances until you have nothing left to draw on but (ironically) the government teat.
I remember when my mom was struggling to raise 2 kids on social assistance, she received a modest inheritance from her father's estate (he had his own mental health problems and had lost contact with his family). Immediately, public assistance was suspended until this money was gone. Instead of serving as a modest capital for a business venture, or payment towards adequate housing, etc. the gov. basically advocated squandering the money so we could be back at square one again. And it was a ridiculously small sum, maybe a few thousand dollars. Not enough to change our life necessarily, but a nice hedge. (If I could go back,I'd tell my mother to withdraw it all and deposit into the Bank of Mattress).
I understand that people shouldn't be allowed to let a fortune sit in the bank while they tap into public funds, but a modest "safety net" for extras and the inevitable costs that assistance could not cover would have gone a long way in helping us get our own footing. It's like they want to break you down in every way possible, make you into a beggar -- diminishment is exactly the right word -- waste your time and create an endless saga of bureaucracy. Is that really the best way to run this system? I am sure the waste of money on the bureaucracy's end must be incredible!

Your story is very humbling. It sounds like you made the most reasonable move you could, and for the sake of your daughter. Never feel down about doing what you have to do!
Malusinka, you are quite right about the ARC name and the demonization of the term "retarded." Back in the 1950s, when The ARC was founded, its member parents lovingly referred to their children and "retarded." Of course, the term was co-opted by others and made to be something insulting. Hence, the name change. And I am sure we will see the name change again in 10 years, when "developmentally disabled" becomes an insult. Indeed, anything other than "Person First" language us already verboten. We are supposed to say "people with developmental disabilities," as they are more than their disability. And so it goes...

I know all too well what your brother experienced. We were so close to the income threshold that, during months when my husband received three paychecks instead of two, my daughter's check was cut off. Of course, we didn't really have a pay increase, but that didn't matter to the system.

deloresflores, I appreciate your comments, but I have to contradict you. My daughter is not lucky to have me. I am lucky to have her. She is the greatest blessing of my life, and I am just doing what Moms do for their kids.
Great story. You are a brave, courageous mom.
Wow Kristi. I have tears in my eyes. That is such a heartbreaking and uplifting story. I know how easy it would have been to give up. I've been sort of there, but nothing near what you've had to go through. Even in Canada, where at least I don't have to worry about medical coverage, or neurologist bills, getting therapeutic services is still a struggle. But you did it. Thumbed. Bookmarked. I plan to send a lot of people to this post.
DPatrick, thanks for your comments. I wanted you to know that your blog actually inspired me to write this today.
Thanks, Juliet! That is very kind of you! I hope that people get something from this story, because far too many people have to deal with just this kind of crap.
These are the stories that make up America and we need to question WHY we have so many systems in place that move at an invisible pace. I have called Social Security several times on behalf of my mother. The bureaucracy and paperwork are mind boggling and frustrating. The wait on hold is numbing. I cant imagine what it must be like for someone that is hard of hearing and curmudgeonly or confused to have to deal with things that do not make sense even to me. Excellent post and good for you for fighting. I see advocacy in your future!
Way to go, Kristi. You should be as proud of yourself as of your daughter. Congratulations on her success.

On this comment, Now if only the government would see it that way, that is, see that needy people can be helped without being demeaned, I think that both our government and our society are dysfunctional in this regard. "We" seem to be more concerned about preventing a single undeserving person from receiving anything from our tax money than ensuring that a hundred deserving people do get what they need. Ronald Reagan should be remembered with scorn for introducing the term "welfare queen" to our vocabulary.
I too, got SSI the first time I applied with my different needs child. I lost it when I inherited my mother's IRA. I could have cashed in the IRA, paid the taxes and penalties, spent the money and maybe gotten the SSI back. Parents of different needs children are sentenced to poverty until their child turns 18. Be glad your kid turned out ok. Mine has been sentenced to a life of poverty because of her disabilities. She can't even own a home and any money I leave her will have to go into a Special Needs Trust so she can continue to receive any benefits.
My youngest BIL has severe CP. They've had to make themselves poor too, otherwise he would have gotten nothing.
For a long time, we also wondered if we were doomed to spend our Genevieve's life juggling resources to make sure she would qualify for services. We've really had it easy, because we seem to be coming out on the other side of this with a bright future. I realize how things could have turned out differently, and I know many wonderful families who have not been as fortunate as we are.

It is the knowledge of how hard this life can be for other families that really gets to me. I wonder how they even manage, and it makes me so damn angry that they have such struggles ahead.
Kristi, Thank you so very much for you courage, candor and sharing your story. You will never know how encouraging it has been.

Since leaving my job in IT to care for my elderly Mom I, too, have become well acquainted with the feelings of humiliation you have described. I cashed out my 401k and retirement savings because my state offers no assistance to family caregivers. Fortunately, my mother does have Medicare and a supplemental insurance plan. But virtually every week brings a new struggle because they are rejecting this claim or don't want to cover this medicine.

Society would rather we turn our loved ones over to institutions which they will paid to give indifferent or inadequate, than give caregivers the support they need to help their loved ones live with love and dignity.

Again, thank you for sharing. I wish you and your family nothing but happiness in the future.
You are a brave little family! I am apalled that you have to humble yourselves financially in order to recieve needed services. Thanks for sharing your story.
Hi Kristy. My son was born with spina bifida. He is a paraplegic and the only time we ever received benefits was in central NY, and they were very good to us. It was not in the form of income, but we had the medical card, which as you said is like gold. We have applied for SSI, but never received it because of our incomes. He's now 18, and I'm hoping to get it from him. SSI is the kind of service I want provided to those that need it (and we're all only temporarily abled after all) am happy to pay for with my taxes. This system is so crooked and broken I wonder if it can ever be fixed. Also, when my ex and I divorced he had it written in the divorce agreement that if our son ever did receive SSI, he would deduct that from his amount of child support. Honestly.
This story reminds me of what my wife's grandfather had to deal with. My grandmother-in-law had Alzheimer's and finally simply could not be cared for at home, even with help. But for Medicare to pay for it, Pop would have had to do what you did with Genevieve--run through pretty much everything he had. It was a mercy in more ways than one that Ami didn't last long once she moved.

I also worked in the office of an SSI/SSRI benefits attorney for a time, and if anyone doubts your story, Kristi, they should spend one day in any office like it as a fly on the wall. The process usually takes years with endless appeals. One of the cases that hit the top of my disgust-o-meter was the Korean War vet rejected for disability benefits, someone the Social Security administration thought was capable of work despite being wheelchair bound and having one foot amputated due to diabetes. My only thought, aside from being heartbroken for this kindly gentleman, was "I pay into the system for this?? This is what I'll have to go through if it's me on the other side of this desk someday?"

pamlyn and latethink, I couldn't have said it better. To force people into poverty or near-poverty just to get the help they need is a crime. I am convinced that very few people would demean themselves just to cheat the system, so I doubt that the gatekeepers are actually managing to stop the cheats at all. They just torture the regular folks who are trying to get by.

I was once allowed to inspect state mental retardation centers under a contract with a nonprofit advocacy agency, and the things I saw gave me nightmares. To think that our children and parents could end up in places like that instead of at home with us...well, I lose sleep over this.
If I could personally endorse my share of those dollars I would. Thank you for this. Thank you for the work you do at ARC. Thanks you for the bravery of writing this, and the guts it takes to raise Gen. She is very lucky.

You write with clarity and poise.
As you are lucky to have her, she is so lucky to have you both as parents.

Thanks for documenting this all-too-common story.
I can so identify with this story, Kristi. My daughter, who is now 23 and thriving, required much assistance to raise. We spent our savings, used up all our insurance and at one point, had to sign her over as a ward of the state to recieve the help we needed. It is humiliating what you must do to obtain needed assistance.

My ex and I are both educators and even though I have nearly 30 years in the system I'll never be able to afford to retire (I'm 57). But my daughter is alive and that's what counts.

Thanks for an important and well written piece.
it would seem that in the face of such an overwhelming red-tape nightmare, any special needs child would need a consultant like yourself with the personal experience, education and writing ability required to get access to the services available.

This whole thing goes back to the terribly ineffective and highly profitable healthcare system in this country. Most of that government help you were getting was going from the tax payers and directly into the healthcare industry's coffers.

As long as there are others less fortunate, you're going to take criticism for receiving aid--even if it is not justified. I'm glad to hear that things are going well for Genevieve and your family.

One detail stood out to me in your story: you wrote that when you quit your job, your household income went from $75,000 (wealthy, at least down here in the south) to $35,000 (more like lower middle class, but far above the poverty line). Obviously you needed help with your special needs child that was far and above what a $35k salary could cover, but why did you quit your higher paying job? You made it sound like you earned $5,000 more than your husband annually, but you quit and he stayed on. I'm not criticizing your decision, but I can see where such a move might have raised some eyebrows.
God I love happy endings! It is so wonderful that little Genevieve is prospering.

Kristi, speaking as a taxpayer I just want to say that I consider the cruelties inflicted upon you by SSI unacceptable. I am so happy that you stood your ground and fought through the spiteful treatment to see that your daughter received the therapy she needed. The world is a better place because you stood up when you needed to. We need more Americans like you.
Edgar, you brought up some very good questions, and I wanted to take some time to answer them.

There were a few reasons why I quit my job even though I had a slightly higher salary. The main reason: my husband had expensive, but VERY good health insurance. My employer, a great non profit agency, did the best it could, but couldn't come close to matching my husband's benefits. The coverage I could get for our family would have cost us in excess of $1,200 per month, compared to $7oo at my husband's job. Second, and also very important for us, was the fact that I was relatively new to my then-current job. I had transferred from one Arc chapter to another so, although I had about 5 years within The Arc movement, I had less than 1 year at my current employer. My husband, on the other hand, had about 8 or 9 years at his job, and felt very confident in his own continued employment.

Finally, and perhaps most significantly, we knew that the parent who became Genevieve's full time caregiver would have to spend a lot of time advocating for, researching, and securing her services. We also knew that this parent would have to take what we learned in therapy sessions and use it throughout the day. These activities included muscle-strengthening exercises, feeding support, massage, speech therapy and even simple play therapy. Finally, we knew that there would be meetings, conversations with providers and insurance companies, and even fights about legal rights. For four years before Genevieve became our daughter, I had worked for a statewide advocacy organization, providing individual advocacy, "lobbying" and education to state legislators about disability issues, and public education efforts regarding disability rights. I had the experience necessary to help other families, so we figured I was ready to do the same for our own family. Also, I already knew how to navigate the social services system, so I knew whom to call and what to say. It was hard, but I was blessed with a great knowledge base and wonderful support system through The Arc movement. We couldn't have asked for more or better preparation.

And then there was this: I was a Mommy who was not only fiercely protective of her little girl, but also in love with the idea of spending every moment with her. I was grateful to be the one to spend my days with her.

My husband is wonderfully supportive, and he takes every hour of overtime he can get to make this work. We are a good team.

On your other comment, about how low $35k really is, is well taken. We weren't completely poor, but we owed more each month than we made. The tricky thing was this: the debt we had - credit cards, mortgage, car loans, and the like - we all committed to when we weren't parents and had plenty of money to cover them. Leaving my job made it very hard to keep up with these commitments, so that was a struggle. We weren't living an extravagant lifestyle, but keep in mind that we were paying $700 per month in health insurance. It was tight, and we were considered to be SSI-eligible, which put us at about 150%-200% of poverty. And that really isn't much to live on.

The upside is that we managed to pay down our debts and get our expenses down to a minimum that works for us. It is amazing what you can give up when you set your mind to it!

Thanks for your thoughtful comments.
Okay, first of all, I am a fellow Yorker. Transplant, working in the non-profit healthcare world. Given the size of York, I am amazed that I don't already know you.

Your eloquent article reminds me of how I can never forget that the clients at my place of employment are so much more than the facet I may see on any given day. I work in a setting where most of the clients are either Medicaid recipients or uninsured. I have heard, from these clients, about the runaround, the rudeness, and the disrespect that they may experience at any given time from the very agencies who are there to help them. I hope they do not find that to be the case where I work. I am amazed, some days, that some of the clients I work with can find the strength to get up every morning to face their circumstances. Most of them lack education and many have literacy issues, so navigating the system can be even more challenging.

I also understand that I am one lost job, one health crisis, one serious accident away from having to access the same services you find yourself needing for your daughter. I am sorry you have such negative experiences. Your daughter is lucky to have such a loving and persistent advocate as a Mom.
Beautiful story! Thank god, your little sweetie had a mom and dad who were fighters.
Your daughter is worth every penny, not just to you but to the US and the world. Much better to invest in our children rather than bombs and bailouts to greedheads.
Bless your little family.
Kristi, my son Ivan still gets SSI (which was hard to get, but not nearly as impossible as it could be) because he is autistic, and he gets covered by state health insurance, even though he is now also covered by my plan. One of the things I worry about is making too much money--if I went over just a teeny, tiny bit I would lose all of it. And the fact that you can't ever get ahead is terrible. My grandmother frequently sent us checks for Christmas and the like when she was alive--substantial checks ($1,000 or so). Whenever that happened, it was a nightmare to prove that we still qualified for SSI.

Ivan's much better now, but I worry about even telling anyone at SSI, because what if he needs some extra care (he still goes to a therapist now, but probably won't soon), or something and we lose the SSI and medical coverage, and then can't afford to get him what he needs? It's a nightmare system. And the fact that you're made to feel like a drain on the system, like some kind of economic pariah is beyond the pale.
I know this will probably piss some people off but I'm going to say it anyway.

And this is from the father of an autistic child who is currently struggling to care for an invalid mother.

IF we lived in a civilized country (but we don't, we live in the USA) you would not have had to struggle with a Kafkaesque and demeaning system to have provided for your daughter. Or my son. Or my mother.

But oh boy, don't those stealth F-22's look pretty? $137.5 million each. But they exist to protect us from all the world's bogeymen (most of which we created) to keep us 'free.'
You should be so proud of yourself.
The bureaucratic bullshit is numbing. Thank God you maneuvered successfully through an unyielding system to give Genevieve the quality of life she deserves. Your tenacity is admirable.
This is yet another sickening example pointing to why we MUST make the transition to Scandinavian-style Social Democracy! What you went through was an outrage!

But this is also an incredibly touching and inspiring story. Thank you for sharing with us both your trials and eventual triumph!
Every penny of that "government money" will have been well spent on a person who will, in all likelihood, be a fully contributing member of society.

As the parent of a kid with relatively a mild disability, we qualify for nada. I'm not complaining, since we are relatively well-off, nevertheless, we are slowly going into debt to get him the therapy he needs to have the best chance at a full, "normal" life. It is astounding how many people here, and among my RL acquaintances, are walking the same path.

Best wishes.
Just an FYI to some of the parents here with children with special health care needs who are able to access Medicaid...

Two years ago the federal govt created the Family Opportunity Act (FOA) (Thanks to Senators Kennedy and Grassley.) The FOA allows families to make up to 300% of the federal poverty level and stay on Medicaid for kids who get SSI or have serious health care needs. Here's the issue - most states have NOT implemented the FOA, like, less than five. It's doable though, - we just got it in Iowa after about two years of heavy lobbying (my job) for it.
If anyone wants info on it, please email me. Maybe I can share something that may be helpful.
It's such a bind for families who have children with special health care needs - forcing them to limit their incomes just to get the medical care their kids need.

all the best -
I can personally vouch for all of what Kristi says she did to help Genevieve reach her full potential. However, Kristi failed to tell you how she has helped other family members and friends navigate the same bureaucracies to obtain needed services for their children. I recall one incident when she accompanied her single-parent cousin to a hearing for educational services for her cousin’s son. At the hearing, the board flatly stated that they were not going to provide the needed services. I believe the reason stated was that the school district could not afford the services – case closed! However, the board believed they were only dealing with a parent who did not know the rules and the law, and they did not plan on Kristi advocating for her cousin. When Kristi stated the law and regulations the school district must follow, they immediately reversed their decision and granted the needed assistance. I probably do not have all the facts correct, but the point is that the board denied services because the bureaucrats making the decisions thought they were dealing with someone who did not know the rules.
How many times does this happen that a person entitled to benefits is wrongly denied benefits because they do not know the rules? Kristi knew the rules because of her Arc background, but she is the exception, not the rule. The problem, as I see it, is that the administrators who make the decisions believe their task is to find ways to deny benefits, when their real job should be to find ways to provide needed benefits. Where would education be if a teacher deemed it his or her responsibility to determine which students were entitled to be in the classroom? Where would our legal system be if the police decided who was entitled to a defense in court? Where would our country be if an administrator decided who was entitled to the rights dictated in our Bill of Rights? Should there be rules? Most definitely, yes. However, the application of those rules must ensure that those needing and entitled benefits receive them. The present system seems to follow the ‘guilty unless proven innocent’ principle.
For every person Kristi has helped, a hundred or a thousand others are either denied needed benefits or do not even know the benefits exist. The inner city children, the children of single parents, the children of middle income families with both parents working, and any other children of parents who do not know the ropes, or have a friend who knows the ropes, are routinely denied the care they are entitled to. Krid, I am proud to have you as a daughter and Genevieve as my grand daughter.
Yes, I am a little biased toward Kristi.
You do understand where that money actually came from, right? Your fellow citizens were forced to reallocate scarce resources for the exclusive benefit of your family. Maybe you should thank all of us first!
Tearful post, despite the wonderful ending. You sound like a remarkable family. Let us hope the next years will change things radically and offer dignity for all people, and creatures as well.

Just a great post, with much learned.
Yes, Crazy Horse, I do realize where the funds came from to fund that care and the school systems we all use, the police and fire protection that we all need, the military that protects our nations and other nations, the roads we all drive on and bridges we drive over, and the myriad of other services we are all entitled to and expect. The funds come from your scace resouces, my scarce resouces, and the scarce resouces of all the residents of our nation. One day, thanks to those services, Genevieve and children like her will have the opportunity to provide their scarce resoucres to help others.
Crazyhorse, you are certainly entitled to your opinion, but I have to point out that the funds that helped my daughter were not just for the exclusive use of my family. Those funds helped take a child - one who could have ended up in foster care - and helped her move from needing serious help to being a normal kid. When kids need help and we, as a society, fail to give it, we will collectively spend a lot more on them to make up for our earlier neglect. Early Intervention is far cheaper than waiting for failure or disaster, and and then being forced to step in and pick of the pieces of the child and family broken and destroyed by disability.

I wish that my child had never needed this help. But I refuse to apologize, or feel guilty for, using the supports to which she was entitled under FEDERAL LAW. And the cost to society? Far less than we spend each month going to war in other countries where we can't win.

And Dad - thanks for what you said. I only did what I thought was right for G, and I would do the same for any child who needed services and was being denied that to which they were entitled. Your words mean a lot, and I love you.
Rated. You said it all.
What a great post. I just found this site and how lucky the first post I read is brilliant. My wife has been a social worker for @14 years, and currently works in the NICU of our local university hospital. She almost daily works with people living through much of what you describe in your post.
It amazes me the stigma associated with people who utilize public assistance. The world is still so appallingly black and white for some people.
I have even run into this with my own family's intolerance toward an aunt diagnosed as bipolar and schizophrenic. She's a sweet, loving person who didn't asked to be afflicted with these challenges.
Thank you so much for your post. I'm sending it to my wife right away.
This is an amazing story and a true testament to doing whatever is necessary for the good of your child. It's so inspiring that she's doing so well now.
Thank you so much for your amazing story. I have a 26 year old daughter with bi-polar disorder and mild autism. Her doctor suggested we apply for disability for her, which she's been denied twice. The whole mess is so complicated, I don't know how people do it. I have post-graduate education, and business accounting and it's too much for me. You are an inspiration to me, and another reason our health care system should be universal health care!
Carol and Scott, your messages help illustrate exactly the problems with the "system." It is so clear to me that, with my blog posting today, I have really hit on something that deserves to be explored further.

I have really appreciated all of the well thought-out comments on my blog today. I am grateful that my family, and my little girl in particular, are doing so well. We really had it easy, as evidenced by the comments on this blog today. This really makes me want to knock some heads together.

Your story has made me proud and privileged to have you as a friend and moved me to become a better parent. Thank you.
Aw, thanks, Kel! How sweet of you to say that! Welcome to Open Salon. I hope you will stick around and share some of your own stories.
We all should thank you for your sacrifice. What you did to help your daughter thrive gave us as a society the benefit of her unique gifts. That's why the stigma and resentment about assistance programs like SSI drives me nuts, because such an attitude assumes that the recipient is not worth a public investment in his or her future.

And amen about the confusing, inhuman, counter-productive system. During my husband's illness, we didn't know from month to month if we would be able to afford his medications. From our perspective, it seemed to depend entirely on the whims of a fickle social service program that took every opportunity to, as you put it, sweep the rug out from under us each time he began to get well.
Story of a very common occurence . To admit you quit a very well paying job in order to qualify for hundreds of thousands in government assistence gives it a whole different angle, yet seems to be well received on OS.

Can't help but wonder what the replies would be like if you posted on a right wing blog site.Perhaps being white would make it ok.
I'm in tears and in awe (both at your family's bravery and strength and the system's utter f*ckedupedness). Our Congresspeople need to see this.
This line perfectly encapsulates it: "it helped me understand how people can be beaten down by a broken, unforgiving system. When you need help, you are treated like a criminal, with so many traps to catch you when you aren't doing anything wrong. One misstep, and you lose everything. And when you finally try to better yourself (by getting a job, for example), they yank the safety net right out from under you before you can find your footing."
Krtsti! PLEASE PLEASE PLEAE write this story to Obama, your congresspeople, the media, anyone you know. GET IT OUT THERE. This needs to be heard by as many people as possible. This is such a terrible terrible example of what is wrong with our country. You must get your story to the ears of our new president. Thanks for sharing it with us. Your bravery and tenacity are astonishing!!!!
Great story. Thank you for writing it.
What a beautifully written story, Kristi. I echo the calls to try and get it more widely read. The demonization of anyone who needs a little help in the US has been so successful that we need every story we can get out there to make people realize what it's like for real human beings facing true hard times.

My ex is disabled by chronic illness and receives SSDI. I had financial resources and experience navigating bureaucracies that allowed us (with the help of an attorney) to secure her benefits with relatively little hassle. In the course of my research, however, I corresponded with so many people who sufferred terribly at the hands of petty bureaucrats working in a system that I'm convinced is consciously designed to just make people give up.

You write very well and both your passion for your daughter and ability to move mountains make you a wonderful messenger. I hope you can get this story more widely read.
all the best to you and your family. this is an inspirational story. thank you for having the courage to tell it and for living it.
Thanks to everyone for the awesome comments. I am glad to know that something I wrote made an impression on so many of you. Sadly, these comments just make it obvious that the broken system is hurting too many decent people who are just trying to get by.

I wanted to clarify one point. When we decided that I would quit my job, it wasn't just a ploy to decrease our income and become eligible for benefits. We were also considering that we needed someone to drive Genevieve to all of the therapy appointments, apply what we learned, and give G the attention and stimulation she needed to catch up. At one point, we utilized 20-30 hours per week of services from various providers and traveled to appointments 5 days a week. It would have been hard to hold on to a job while taking that much time away from the office. We knew that my "job," at least for the immediate future, would be to take care of our daughter. So many factors to contributed to our decision, but the glaringly obvious fact was that more benefits would be available, and for a longer period of time, if we made less money.

I have no doubt that this piece would get a less-than-lukewarm reception on a more right wing website. But then again, consider the source. I argue regularly with self-identified conservatives who say that I should have kept our problems at home and handled them privately. But they've never been in our shoes. Let them go through this, and then they will be qualified to judge us.

After all of this, I got to return to my other world, free, for the most part, from the explanations and judgments and humiliations. I know so many families who will live this indefinitely, and these are the people who deserve our compassion and praise.

Thanks for the support and feedback. I guess I should get to work on my next blog entry. There is still much to be said about these issues.
My daughter was born at 26 weeks and she's now 20. Reading your story brought it all back. She came home 3 months later, 1 week shy of what had been her due date. I didn't go back to work for 6 years. I too had to learn to weave though the system, living in poverty to have what she needed. Those who've never had to wait in those offices, ask for assistance, tolerate being treated as if you're a waste of space and stupid to boot can't get it. I did it all for my child. For her I had the strength. People who label and judge those who receive assistance? I try to forgive them for their ignorance. Love and light to you and your daughter--to paraphrase the famous "It's A Wonderful Life" line--the richest in town!
Public aid is designed to create dependency, not independence.
You are an amazing advocate. Your story is wonderfully written, spiced with your feistiness, and boundless love for your child. As others in the comments have stated, this story needs to get out there beyond OS. It's a common one, although of course, unique. Just having written it, putting it out into the ether, you have initiated change. (what Keith said below - or above? - about the lack of "civilization" of the U.S. is true. I hope that, of all places, on OS we can be unafraid of saying it like it is: the U.S. is an arrogant, naive, self-centered, clueless country, run - in so many cases - by people who haven't the slightest idea what it's like to be a middle class citizen. This was of course, perfected by Bush's regime, but he wasn't the first.) It's shameful what you had to go through. But - an amazing happy ending! You are a hero in my book - not only for what you did for your daughter, but for this post and what it exposes, in a beautifully written piece.
I became poor to expand my CD and DVD collection. I guess your sacrifice is more noble, though.
Oh.... you went through the mill...got chewed up but never once lost your footing as guardian angel to that dear little girl!
Congratulations; what a F-A-N-T-A-S-T-I-C win for you, your husband and for your little girl!
I am in awe of what you've overcome to GET THERE!
(((huge grin)))) xx
So moving. Thanks for sharing.
Jesus said to sell all that you have and give to the poor and you will have treasure in heaven. The poorest people I know are the ones with money. Gandhi made himself poor to become rich. Getty made himself rich to become enslaved and shackled. Yet, there is profound wisdom in the proper stewarding of one's possessions and even great wealth. This growth experience will open up many doors of prosperity for you. You are on your way to laying a strong foundation to support extraordinary wealth.
She sounds like a lucky kid. I was adopted myself, long ago.
You are an incredible woman. I can not tell you or your husband how much your sacrifice is needed for children. I thought i might have had a child with someone that chose to terminate instead of adoption. She always told me that the child wasn't mine so I had nothing I could do. I could not imagine what you and your husband have gone through. I think the two of you are saints. If i had to choose my parents i can't think of two people that are better suited than you. My wife and I are recently married, we are not sure if we want children at this point, but if we decide to have children; i just hope that we are as good as parents as you are. Good luck, and our prayers be with you. Take care of your angel. She is a miracle.
You worked hard before going on public assistance and when you no longer needed public assistance, you returned to work. You paid taxes into the system, too, so you in a way earned your right to the benefits that you received.

I think you did the right thing for your daughter as well as your community by doing what it took to make her whole and productive.

There are some unfortunately who do abuse the system and that makes honest people suffer.
Thank god we have such a sterling health care system.