Stories of families with children on SSI

We understand that Congress is considering the abolition of the SSI child disability program. Some are arguing that children and families only need services, not additional income. In order to learn more about the value of SSI for the families of children with disabilities, we decided to ask them. Here are ten of the responses (with names removed for confidentiality.) Thank you Beth and Leslie from the Oregon Council on Developmental Disabilities for spreading the word.

* I have a son that’s 12 yrs, he’s autistic non-verbal and has seizures. He has had S.S.I. for a long time. For starters he needs his money. I’m a stay at home mom with two kids. My husband is the only income and he barely makes a enough to get by, plus what our son gets to. My husband would have to be making $18.00 hour for us to just get by. Things are so expensive, rent, food, gas and exact. Oregon is the most expensive state to live in, I just don’t get it. It’s crazy, it’s get bad, not any better. Plus if our son didn’t get social security at all, I would have to go back to work full time and that wouldn’t work, because of our sons special needs. He needs that money for food, clothing and to help with other expensive and if I had to go back to work, I would have to find full time daycare for our son, that’s also to much money, who would have to pay for that? Us. Also what I don’t get is that social security payout is higher in other states, like Idaho $1300.00 a month. So what’s wrong here? I hope this helps.

* When my child was quite young we learned of hearing loss as well as severe behavioral issues that resulted in not being able to attend regular public school. A friend suggested we apply for SSI for them so we did and was granted. A couple years later, due to such violent behavior, my child was allotted a space in a residential facility. We lost the SSI for them which left my oldest daughter and I homeless.  After leaving the residential program 2 1/2 years later we were able to get the SSI back for my youngest.  However, with the 2nd Budget Reconciliation Act allowing the abolition of the SSI Child Disability Program, we are once again looking at being homeless. This would leave two disabled children and myself, also disabled, living in a van with our service dogs. My autistic daughter has already had to be homeless a couple times due to insufficient income and should this happen again, will most likely send her into severe regression again.  As it is, our income of $1450 per month is barely adequate to cover housing, utilities and groceries. We are dependent upon food banks and creative budgeting to make it through the month. Losing her SSi will be devastating.

* This is a terrifying thought for my family. I’m a single parent of a 11yo. child with severe Autism, Developmental Delay, Behavior Disorder, Receptive Expressive Language Disorder and Cerebral Palsy. He requires around the clock care and is on a modified schedule for school out of my care for just hours a week. I am completely unable to work because of this. Not only because he needs constant care but also because the rate of pay it would take to find someone to care for him would be more then any hourly wage I could ever hope to make.  At 11 my son is completely incontinent, still using diapers, has inhome therapy needs, communication supports, sensory regulation needs and general well being needs that are met solely because of his social security. Insurance does not cover his doctor recommended or prescribed care! His quality of life would regress in immeasurable amounts. We are only one family and I’m sure you can see how negatively we would be impacted. Please fight for us.

* As you know cutting SSI for disabled kids will devastate many, many families.  Some of the burdens are eased with programs like SSI. I went back to college and finished my degree when my boys were toddlers. Mid way we were given some harsh news and reality changed quickly. Despite a having a degree it is very difficult for me to work outside of the home. My husband has always worked full time but one income does not support a family today. SSI for the boys has helped ease this burden. I just began working part time as a personal support worker for another child with disabilities. It is through the k plan, another very vital program.  If these type of things are cut, the crisis of homelessness will absolutely rise. The fate of these kids will be seriously impacted, as we are already struggling to give them the best futures possible. The need for housing assistance and food stamps will undoubtedly rise. Where will budget save then?  To think parents use SSI to just not work is foolish. I want to work. I want to use my education. There is not child care easily found for children with disabilities. We often get called during the school day to come and pick up. I urge congress to really, really look into what our daily lives look like and see just what a major crisis this will certainly create. We are not living a life of luxury because of SSI. We simply survive.

* Having SSI is a blessing it helps me pay for things that Mason needs and it allows me to stay home with him and homeschool him. Mason does not do well in large groups and around loud noises so class room settings have never been good for him. Which is why I have chosen to homeschool.  Losing SSI would be absolutely devastating for us. Besides EBT and TANF Mason’s SSI is our only income. My mom is truly amazing in letting us live with her and only having to pay a small amount of rent each month to help her with her mortgage. As a family we continue to struggle even with her working as a medical assistant. I honestly don’t know where we would be without Mason’s SSI.

* My son is 7 years old and has been enrolled in SSI for several years. My husband’s income hovers on the cut off line so most of our experience has been stressful and frustrating back and forth with paperwork. Despite the glaring needs for improvement I value SSI. When my son was injured at birth my family was instantly reduced to living off of one income while our expenses skyrocketed. It gives me a tiny bit of security to know that if my something happened to my husband or his employment, there would be a small amount to fall back on. I would say that the amount needs to be increased as well as the income cap for my husband.

* I am the mother of an amazing young man who experiences disability. He’s now 11 years old and has received SSI since he was about a year old. Our family depends on that SSI for survival. My family depends on the Affordable Care Act as well. We are now facing changes to these supports that would significantly impact us in critical and very negative ways.  Having a child with a disability is more expensive and more time consuming than having a child without a disability. He has more medical needs, more educational needs; As a result, either my husband or myself has needed to be present for hundreds of appointments and meetings at this point. Scheduling meetings outside of working hours is often impossible. Most employers are not willing or able to grant someone that much time off, nor could our family pay our household bills on the reduced income.  When talking about medical costs, I think many people don’t understand the scope of what that really means. There is a broad range. My son uses a CPAP machine, which requires replacement supplies every month. If it were not covered by Medicaid it would be several hundred dollars out of pocket. My son takes medication which out of pocket would run us $65-$100 every month. These might be considered absorbable costs by a family with two working parents, but that’s not possible for our family.  When my son was 6 months old, he experienced a medical issue resulting in the need of an 8 week course of injectable steroids. I was not as well versed in medical/insurance procedures then as I am now, but in 2009 the cost of that course of treatment was estimated between $80,000-$100,000, which doesn’t even take into account the week we spent in the hospital.  My son has needed several medical procedures and hospital stays since then, and has needed one parent to be able to travel with him from our home to the nearest hospital where those procedures can take place, sometimes for extended periods. We cannot maintain a household where both parents work and handle all of my son’s appointments, meetings, and care needs. SSI allows us the flexibility to use those funds to pay our power bill, our Water/Sewer/Garbage bill, to help pay for housing, or to pay for his food or clothes. That flexibility is important.

* My 4 year old autistic son started receiving SSI in the summer of 2015. At the time of his diagnosis in December 2014, at 2.5 years old, he was nonverbal and had gross and fine motor delays. Getting that diagnosis opened up access to a lot of resources including Early Childhood Special Education preschool, Developmental Disability Services (including a caseworker and respite care), SSI, Oregon Health Plan, and more. These supports became even more important to us when my son had his first seizure in September, and was then diagnosed with Chiari 1 malformation and epilepsy. It’s vital that I stay home instead of working so that I can be there for him (or get to his school or the hospital) when he has a seizure. And so I’m available and not at risk of being fired when he needs surgery or an inpatient EEG, or is admitted to the hospital following a seizure.

* The support we receive through ODDS and SSI has made it possible for our family to live a normal life. Our son was diagnosed with an Autism Spectrum Disorder at the age of 3. Non-verbal and unable to care for his own needs and safety, we struggle to get enough sleep, to take proper care of our health, and to find an hour or two of quiet time to prepare ourselves to do it all again the next day. ODDS and SSI support has allowed us to hire careworkers to shoulder some of this burden. We’re able to find time to prepare a proper, healthy meal for dinner with a skilled careworker within arms’ reach of our son making sure he does not injure himself. We’re able to get a full night’s sleep with a careworker who will be there for that occasional night to make sure he doesn’t run around in his room at 3 am. We’ve been able to regain a normal life with this support.

* I’m a single mom of three kids , 2 of which are on the Autism Spectrum!! SSI has helped in so many ways with shopping for groceries, our electric bill , some Rent with utilities , my kids needing new beds because they wore out their mattresses, clothes because they out grown their former ones, getting out for community outings to show them how life works, since financially I can’t afford a car, so we use Trimet quite a bit.

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