Dawn With Multiple Disabilities Seeks Grants For Self And Extended Family
by Dawn Barnhart
(Liverpool, NY, USA)
I am a single 40-year-old woman. I am the oldest of five. I took care of my family emotionally and physically by being there from the time I was 18 onward, (meaning I never really got fully on my own).
My mother was in a bad situation and her health was not good. She passed away several years ago and since then I have taken care of my two younger siblings.
My brother who is now 24 and my sister who is 22 have Down syndrome. I will be taking care of them for the rest of our lives together.
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I was born with clubfeet and lazy eye in both eyes, scoliosis and breathing issues. These were all brought on by the fact that I was technically premature meaning I was underweight and small but I was full term.
The clubfeet had the surgery in which they break the heel and cast it. My parents were told I would never walk. We proved them wrong. I started walking late but I could walk.
I did not see a doctor for the lazy eye until I was about seven or eight.
Due to an accident as a toddler I'd developed bursitis in both of my shoulders.
When I was a teenager my parents got divorced. This led to depression, which caused me to gain a lot weight.
The weight gain and the way I walked due to the clubfeet caused me to have unstable kneecaps and weak ankles. I had two surgeries in 1990 to 1992 for the knees.
I'd also developed bronchial asthma during this time as well as allergies that would cause the bronchial asthma to flare.
I also developed ulcers, upper hiatal hernias (reflux), migraine, tension and cluster headaches and had to start wearing glasses.
My blood pressure around this time also started being on the high side of normal.
When I graduated high school I started to work as a waitress. This weakened my ankles and heels, and caused the arthritis that I had developed during the knee surgeries to progress even further.
I had applied for Social Security Disability due to this but was denied.
After working as a waitress for about two years, I then changed jobs to being a cashier at a convenience gas station. I expected to be able to sit for most of my shift, but I was not.
I worked at three different convenience gas stations over seven years. During this time I reapplied two more times for SSD. Still I was denied.
In September of 2001 I received a letter from my orthopedic specialist to give to the state that said I was denied. It described, in medical terms, the issues with my knees ankles and heels.
I took this letter along with other medical information pertaining to my asthma, my high blood pressure, ulcers and reflux, and reapplied for SSD. I was denied yet again.
This time, due to the fact my mother was finally diagnosed with bipolar, COPD and a bunch of other illnesses mental and physical she had a psychologist. Also, because my youngest sister had Down syndrome we had a caseworker to work with. She helped me get a lawyer to fight my SSD case.
It took almost four years to get classified disabled. But I did. I worked part-time as a cashier at Home Depot at this time. They worked with my disability to an extent, but not enough that I could continue working.Financial Hardship
I felt the need to continue living at home for the health of my mother and safety of my youngest brother Eddie and my sister Vicky. I did not receive any kind of public assistance, including Medicaid, once I was classified and receiving Medicare and SSD.
I paid my share of the rent and utilities and other costs out of my SSD payment and any babysitting jobs or computer repair jobs that I could pick up.
The odd jobs did not pay much, maybe enough for a pizza and soda for a meal for the family. I felt I couldn't charge family and friends and friends too much. It was just sitting at a desk running tests on a computer and then fixing the issue. It usually took about 15 minutes once the tests were done.
In 2007 my mother passed away due to multiple reasons but primarily from accidental drug overdose of prescribed pain narcotic medication.
At this time I was given custody of my two siblings the youngest being my Down syndrome sister. My younger brother was in my custody legally for only a few months due to the fact he was already 17.
We moved to a location that was closer to my other sister so that she would have a babysitter for her son and I would have someone to assist me with transportation for groceries and the like.
She lost a license due to a DWI for about two years right when we moved, so that didn't work out as planned.
My youngest brother continued to live with me but paying well less than his share of the household finances.
He has said he thinks he would like to stay with me for a while meaning more than one or two years. We do get along and he does help with chores.
I tried to get us on some public assistance over the next several years but it was very limited due to my brother's income that had to be included in household income.
I kicked my youngest brother out due to the facts he just won't grow up. But I am assisting my middle brother out by allowing him to stay with us while he gets himself resituated.
Over the last several years my health has deteriorated. My arthritis has gotten worse throughout my body. I've also been diagnosed with fibromyalgia.
My general physical health makes it hard for me to do any kind of work for any length of time. I can handle the general housecleaning, cooking and laundry with pain, but not enough to make me stop totally.
Due to the facts that my health requires me to see my doctors more than or at least three times every two months and then I have to be home when my youngest sister is also home back from her day program/school, I am unable to rely on the local bus I had managed to find a supplemental Medicare Insurance that included 20 roundtrips medical transportation. As of this year they do not.
I am supposed to be going to physical therapy, seeing a psychiatrist, doing water therapy again, all of which I have not started mainly due to lack of transportation.
I spent the better of two weeks calling multiple insurance companies to find if any offered a similar program of medical transportation. All told me through Medicare supplemental no, but if I had Medicaid then yes.
I called and talked to face-to-face Medicaid coordinators but was told because I was already on Medicare and receive SSD that I do not qualify for Medicaid.
I am worried that the obsessive–compulsive disorder (OCD) and bipolar disorder that I have always had (they run in the family) are getting worse.
I am told that because of my youngest sister I should be seeing a psychologist or psychiatrist, or at going to Comprehensive Psychiatric Emergency Program (CPEP). That would a stay of 72 hours and transportation, which is a problem.
My middle sister can't help as she has her own problems and her own son to care for. My youngest brother can't help either, as he is not responsible enough. The middle brother that is staying with us right now can't either, because he has a night job. Income Efforts
Everywhere I go I am told I make too much. My SSD payment is $950 and my sister receives $744.
If it wasn't for my medical expenses that I already take care of, we would probably be okay financially, not good but doable. As it is I pay about $100 a month for over-the-counter meds and copays to the doctors.
Rent of $690 a month does not include heat. Food for myself and sister runs up to $650 a month, as we try to eat as healthy as we can.
Electric, which is what heat is, during most of the year runs about $175 and during the winter runs around $300 a month.
If I were to go to my doctors as recommended and took a bus, it would run me well over $200 more a month. If I were to take a taxi, it would cost up to $400 a month.
By the time rent, utilities, phone and groceries and prescriptions are paid there is little left for clothing and basic entertainment like Internet, cable and delivery pizza once in a while.
No family member that has a vehicle has the time or inclination to help me. The few friends that I have in this location also have similar responsibilities of work and their children.
I have been told that if I had a bedroom for each adult living here I could possibly qualify for additional programs that would bring in anywhere from $200 to over $1000 more a month (basically because my sister has Down syndrome).
I would work if I could find a job that my disabilities would allow and still be able to be home when my sister is.
I am unable to do most physical work because of the arthritis and other physical disabilities. I cannot sit or stand for any length of time. Due to the asthma, I cannot work outside or in cold rooms.Specific Needs
These are programs I would be interested in learning more about and possibly qualifying for.
1. Very low cost or free Medical and non-medical basic transportation services.
2. Three-bedroom housing of some form in the general location of Liverpool, NY, where I am in now.
3. Furthering my education in multiple fields, so that I could find work (like writing or computer repair) that takes my disabilities into account.
4. Transportation help that would allow me to go to all of the doctors and therapy sessions that I am supposed to go to.