Jared's mom pours her heart out in a letter to the President . . .
My Country Tis of Thee
My country tis of thee, sweet land of liberty. of thee I sing.
Land where my fathers died, land of the pilgrims' pride,
From every mountain side, let freedom ring.
My native country thee, land of the noble free, thy name I love.
I love thy rocks and rills, thy woods and templed hills,
My heart with rapture thrills like that above.
Let music swell the breeze and ring through all the trees sweet freedom's song.
Let mortal tongues awake, let all that breathe partake;
Let rocks their silence break, the sound prolong.
Our father's God to thee, author of liberty, to thee we sing.
Long may our land be bright with freedom's holy light.
Protect us by thy might, Great God, our king.
--Samuel F. Smith
Letter to President Bush, Con'd from Page 21
I wish I could say that the Masten family lived happily ever after, but I can't. In order for the Mastens to keep Jared's SSI benefits, the family, a family of six, is only allowed to make $28,092 gross a year. The Mastens had to sell the only new car they had ever driven because they could no longer afford the payments. Their savings were wiped out and their dreams of ever owning a home vanished. Keeping Jared's medical benefits became an obsession with the Mastens. It was imperative that he receive medical treatment when he needed it. The Mastens were turned down by one insurance company after another after another. Or, they could have been picked up with Jared excluded, at a premium Donald Trump might have trouble paying, and no offer of major medical.
Jared's mom comes from pure fighting stock. Her uncle Charles fought in the Vietnam War. Her grandfather defended this country during the Spanish American War and her great grandfather five generations removed, Colonel Richard Gentry, Major General of the Missouri Militia of the first regimen of Missouri Volunteers, lost his life in 1837 during a battle against the Seminole Indians in the swamps of Florida. However, before surrendering his life to battle, he served two terms in the Missouri state senate in 1826 and 1828 and Gentry County, Missouri is his namesake. He also fought in the war of 1812 under the direction of General William Henry Harrison. Mrs. Masten's roots have been traced to Mary Todd Lincoln.
Today, the Mastens are fighting a different war. Repeatedly, even though Dad's income was within the "acceptable range," Jared was bumped off his SSI benefits because his father's income was "over scale." Knowing that Jared's prognosis for a normal life hinged on one final surgery crucial for building a new wall in his heart, and having his medical assistance constantly threatened, was almost more than his mom could bear. The stress of dealing with the Social Security Administration nearly took away his mom's physical and mental ability to care for her children. She had to seek professional counseling. Her diabetic condition worsened. She had been neglecting her own health care because there simply was not enough money to care for her diabetes properly. Disposable syringes used for insulin injections intended for one-time use were used over and over again. She was unable to maintain her daily glucose monitoring because the cost of the over-the-counter glucometer sticks could feed her family for a week. She did not see a doctor on a regular basis because they always sent her for a "few tests" that would later result in bills amounting to hundreds of dollars.
With the help of a state-funded attorney, because the family could not afford a private one, Jared's case was reviewed. Mrs. Masten was told that "Jared's case worker is not competent enough to handle Jared's case." Only because the Mastens were able to persuade Steve's boss to pay him bi-monthly on a salaried basis, instead of computing his deserved overtime, Jared was able to keep his medical assistance.
One day, out of frustration, Mrs. Masten called the state medical assistance office and asked them why there were such restrictions on income. She suggested that she and her husband be allowed to make as much money as they possibly could, forfeit the SSI benefit payment, keep Jared's medical assistance and then be assessed for excess income that could be contributed to the medical assistance program. She was told that was not possible. The day Mrs. Masten would go to work her son would lose his medical assistance. The risks were too high.
1987 - Jared's four-year-old brother is diagnosed with aortic stenosis, a potentially fatal heart disease. The Mastens--still uninsurable.
1990 - Dad starts his own business with what little savings he's accumulated. He builds the business as far as he can without expanding.
1992 - The Mastens business is faltering because they cannot acquire the $8,000 loan needed for expansion. Credit is good but they have no "assets." The reality of that set in when the Mastens were turned down for the business licence they needed to move forward with their business because they did not have $10,000 in liquid assets and $40,000 in other assets.
Dad is deaf in one ear due to an accidental injury three years prior. Only surgery can repair the damage. Jordan, their eight-year-old son, is in need of having a cyst removed from his ear "before nerve damage and disfigurement" according to a Johns Hopkins specialist, occurs to his bright, smiling face. And mom, well mom has been putting her health care on hold for six years now. She was told six years ago, again one year ago, and again one month ago that a hysterectomy might alleviate the pain she's been enduring. Other less expensive forms of treatment have been tried--but to no avail. To take her mind off herself, Mrs. Masten served as PTA President for the 1991-92 school year. During that time, she went to college full-time, on a grant, and received her Associate Degree. She has done volunteer work with the physically handicapped and enjoyed every rewarding moment of it. She now serves in the presidency of her church's Relief Society which gives compassionate service and aid to others. She learned that by helping others, she was really helping herself overcome her feelings of helplessness "the government system" had instilled in her.
Mr. President, my name is Donna Masten and I have written most of this letter in third person because emotionally it's easier for me. The Mastens are survivors but we need your help. We have four wonderful children that we so desperately want to see raised into healthy adulthood. We feel cheated that we cannot give them the security of a nice home. We are raising them in a two bedroom rental home because that is all we can afford while receiving SSI. We are struggling to provide all the social and cultural things they are in need of in order to develop their talents and abilities and to live up to their full potential. They are wonderful children. They understand the sacrifices we have made and why. They never complain about what they don't have and are grateful for what they do have. We have experienced medicine at its very best and at its very worst. PLEASE, Mr. President, make the health care system work for all of us. Many times we've had our dignity stripped away and our integrity threatened by insensitive persons who see us as a menace to tax-paying citizens who've "supported our son's medical care." We've also received a lot of support from caring individuals who've been sensitive to the needs of this family.
I would volunteer all of my time and what energy I have left to teach my survival skills to others. I sew and preserve food for my family. I have learned to manage what little resources we have to provide a healthy environment for my children. I would gladly stand before our legislators and plead the cause of my family and others like us. If there is anything I can do to help reform the welfare system of this country, I will gladly and proudly do it. I have written this letter in all sincerity and have documentation to support my statements.
Yours most sincerely,
Donna L. Masten
* * * * *
I feel almost ashamed to admit that I never mailed that letter. As I was writing page 21 of this blog, a memory of the letter entered my mind and I wondered if I would ever be able to find it. When I opened a certain file, it nearly jumped out at me so I thought I should include it.
If I knew then what I know now, I probably would have mailed it. I felt so defeated and was so exhausted all those years ago that I assumed one person could not make a difference. Since then, I have learned that one person definitely CAN make a difference in this world. I salute all those who stand up for what they believe and aren't afraid to fight for it, even though it may cost them their lives.
As we have recently observed Memorial Day and D-Day and our thoughts have been on our troops and their families, I can only say thank-you to all past and present who have made a difference in my life by the freedoms myself, my children and my grandchildren have come to revere and hold sacred.
The Story Continues . . .
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