Disability Activism & Advocacy

Because a just cause is always worth fighting for.

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  • permalinkI'm asking Disaboom family for help...

    mixme

    Posted on: Sat, Oct 31 2009 11:35 PM

    Below is one family's story. This is a press release already circulated. I NEED IDEAS! Who else can I turn to for help? Don't let me down guys! You can contact this family through me or the blog site. They want to give their disabled child in their home a PERMANENT loving home!          julie

     

    I am writing to ask for your help for our adopted special needs child, Sydney Donovan. Because of the misinformation we received from the Louisiana Department of Social Services about the financial assistance Sydney would receive for her care, we find ourselves in extreme financial crisis trying to care for a child whose expenses are constantly increasing and at great risk disrupting our adoption. We are hoping that if you can bring national attention to our story, someone will hear our story and find a way to help us. To that end, we have also created a blog at http://sydneysfamily.blogspot.com/ to publicize our plight.

    Sydney came into foster care at 19 months old, as a result of a report to the OCS office for an investigation. The investigation revealed that Sydney's birth mother, Whitney, was in a coma due to methadone abuse. It was alleged in the state’s report, that Whitney was also crack user and Sydney was born addicted to crack. When Sydney was found, she was living with her biological grandmother but was horribly neglected.

    Sydney’s foster parents were my son and his wife, Lance and Holly. While in foster care, Sydney was diagnosed with Spinal Muscular Atrophy SMA type II. This is a progressive degenerative disease that affects her muscles, spine, and respiratory system. This type of Muscular Dystrophy will get worse with age. After this diagnosis, Sydney was run through a battery of tests. She was put on a Cough Assist Machine, an EZPAP device, a portable suction unit, Vest Therapy, a pulse oximeter, a bipap machine with 3% saline, and twelve medications, four times a day. These treatments required around the clock care. When Lance and Holly were no longer able to be foster parents, my husband and I took Sydney into our home.

    I talked to the case worker at the time, Rachel Polo, about fostering Sydney until she found a family that would take her. Mrs. Polo told me the state would provide for Sydney’s care because she was diagnosed while in foster care. After being adopted, she would continue to receive the same benefits so as to remove the financial disincentive of adopting an older, special needs child. By that point, Sydney’s birth mother had died, so Mrs. Polo said Sydney could draw on her birth mother’s Social Security. She would also get Social Security disability payments.

    Because of her fragile medical state, her doctors have not wanted Sydney in daycare, so when she came into our family, I left both of my jobs to provide care for her. Since that time, we have filed for the Social Security benefits we were promised. We were denied those benefits. Our Social Security benefit claim was denied based on the biological mother’s lack of work history as well as on the level of our income. The State of Louisiana cut our subsidy. In short, we now receive several hundred dollars less per month than Ms. Polo promised us.

    When we found ourselves in this financial crisis, I explored the option of returning to work, but Sydney needs regular medical care throughout the day and night. Because of Sydney’s medical fragility, she is unable to attend school on a consistent basis, meaning she must stay at home. Simply stated, Sydney requires a caregiver to be present 24 hours a day.

    We sought the help of Social Services with our finances. As an alternative to financial help, we asked for a medical professional to assist in the care of Sydney while I worked. We have spent day after day tracking down leads that amounted to nothing. We have been to meeting after meeting, only to be told that nothing can be done to help preserve our adoptive placement. We have been repeatedly told that the only way there will be more money to fund Sydney’s care will be for us to disrupt our adoption. We have been told by the social workers who have attended the service meetings that the state will only pay for Sydney’s care if we return her to foster care; otherwise, there is no money or service available to pay for Sydney’s care.

    At this point, my family has reached our breaking point. We have been fighting to keep Sydney in our family for many months, with no help from any of the employees paid by the state to protect Sydney’s best interest. We have run through our savings and are in danger of losing our house if we do not get more money coming in immediately. I must return to work. Because Sydney’s subsidy does not include trained medical care while I work, and because no one has been able to help us find a way to keep Sydney in our family, we will be forced to disrupt our adoption and return Sydney to the care of the state.

    My family is devastated. When we adopted Sydney, we intended to care for her for the rest of her life. We examined the financial aspects of her care before finalizing and based on the information we were given, we would have been able to cover all of Sydney’s needs. Sadly, the very people the state has entrusted to look out for Sydney gave us faulty information. Now, Sydney faces the impermanence of foster care once again. We feel as if our many pleas for help have been ignored. We have been promised time and time again that these social service professionals will help preserve our adoption, but again and again they are not following through. My family has reached the limit of what we can afford. We simply do not have the financial means to care for Sydney any longer without help. We are praying for a last minute miracle that will enable us to keep Sydney in our family.

    Thank you in advance,

    Sherry Donovan

    ~swore off normalcy for yet another day~
    http://www.myspace.com/mixme00
  • permalinkRe: I'm asking Disaboom family for help...

    Stephen

    Posted on: Mon, Nov 9 2009 1:31 PM

    This story is very upsetting on several fronts. States vary on the amount of financial help available to disabled children thru existing programs. Muscular dystrophy in infants is normally a terminal condition. Bringing in a 24 hour caregiver is an enormous financial burden. Things must be sorted out with the child's best interest in mind. Try contacting MDA and see if they can guide you to resources. If you must withdraw the adoption to insure Sydney's needs are met, so be it. The state may reconsider once they see they are going to pay, one way or another. Write your state's senators and get someone with political pull behind you. If you must go back to being foster parents for Sydney, that's not so bad. Nothing else will change other than her guardian status. Good luck! I hope you find the help you need. Stephen
  • permalinkRe: I'm asking Disaboom family for help...

    Lily -- Disaboom Site Admin

    Posted on: Mon, Nov 9 2009 4:51 PM

    Hi mixme, thanks for sharing this story.  It's heartbreaking when
    someone tries to do a good thing, but the system gets in the way. 

     

    The Advocacy Center in Louisiana is a member here on DisaboomLive.
    Maybe they can offer some advice.  Here's a link to their profile: 

    http://www.disaboomlive.com/members/AdvocacyCenter.aspx

     

    It sounds like this family is the ideal family for this child and all efforts
    should be made to keep her in their home.  Please keep us informed.  Thx!

     

    ~~  Lily  ~~


  • permalinkRe: I'm asking Disaboom family for help...

    swan

    Posted on: Mon, Nov 9 2009 7:01 PM

    Contacting one's congressperson can sometimes work better than senators. I have had good luck with this. Also if you can get this story into the media - local TV or newspaper, it might make a big difference. Good luck . . . swan . . . .

     

    http://goodwordswan.wildflowerstew.com