Disclaimer: The following letter has not been edited for content, grammar, or punctuation. This is a Mother’s cry for help within our own system. This affects all of us.
Dear Mr. Haridopolos,
I am writing you this letter today with the sincere hopes you can help assist me in making changes in our current system. I am a very proud mom of two beautiful children. Our daughter was born with two separate health issues. One being she was born with a Unilateral Cleft Lip with gum involvement, the other we later found out was that she also has some kind of mental deficit. Between the two conditions we have spent tens of thousands of dollars each year depending upon what was required to be done trying to help her. Her case as we are told by a “World Renound Geneticist who has written books on the topic of Genetics” is a complicated one that cannot seem to be solved.
We are not alone there are many families just like ours that are going through the same issues that we are having. I am deeply concerned for our challenged children. With Autism [1], PDD-NOS and other Neurological disorders on the rise this will greatly impact our society maybe not now but fast forward to when we will be retiring. With these staggering statistics it can greatly impact society as a whole not to mention our economy. In fact it has already begun look at the staggering waiting list for Med-Waiver [2] which my daughter is on. There are currently over 14,000 people waiting. This number will vary from time to time but just the fact that it is that high is very concerning. By the time my daughter is eligible she will be old enough to get them for herself. It is not only imperative we help the children who have been affected but we also need to get to the root as to why these disabilities are increasing at such a rapid pace. There has to be a common denominator. Perhaps the increase started when artificial nails were introduced or different additives and or pesticides were introduced to the food/water supply This is not suggested to blame anyone it is just to find the cause and correct it so that more lives aren’t affected.
We have been to social services many times each time (with the exception of the last time) We have been told to get a divorce [3] because we would than become two separate incomes and maybe than we would become eligible. Can you believe that talk about insult to injury Divorce and than we may qualify! With all do respect Sir how in this great country that I believe in can I be told such a thing? I thought we were for family value and integrity how is it having integrity when an agency tells you ” “You don’t have to really divorce just on paper he can still live with you” ????? I thought this was something recently being said but sadly we have been told by many other families that they were told the same thing. One of our dearest friends [4] who has two disabled children told us he was told that over 40 years ago. You mean to say this has been going on this long and nothing has been done. How many divorces occurred because people followed that advice doesn’t that affect our economy? This is why I feel it is time for change real change.
I can understand that budget cuts [5] are necessary but they seem to take more and more from our children and I wonder why it always seems to affect those who cannot defend themselves. I recently wrote a letter to our Governor Mr.Crist and he was gracious enough to forward it to one of his colleagues whose name was Vern, Vern than forwarded it to Mrs. Eva Stokes at DCF she explained to us that we should reapply we went through the whole process again only to hear that we do not qualify again. Eva tried very hard to help us and was extremely compassionate and professional however with the current system the way it is we do not qualify for anything. We went through the whole procedure again only to be told we make too much money. I truly felt Eva did everything she could it wasn’t her, it was the way the system is set up this is why I am writing you and all the other legislators in hopes you will hear me and help make a difference for our children.
Eva informed me that currently to qualify for benefits your Gross monthly income for a family of 4 is $1,700/month. With all due respect how can this be? When was the last time this was revised? With gas being anywhere from $3.50 to $4.00/gallion and milk being the same. If you honestly tally up monthly expenses who could possibly live on that. Are we not promoting crime? Let’s look at this a minute I can only make $1,700/month which means I can only gross $425/week which is not that I will actually take home that amount it would be even less and with that I am responsible for up keeping my children’s expenses such as clothes, school supplies, co-pays, deductibles, other healthcare costs not covered by insurance, gas in my car, car insurance, health insurance premiums, phone bills, groceries [6], rent, water, etc., etc. if I should go over that I won’t qualify right so what would be the incentive to better ones self being the way it is.
For instance say I can make $2,000/month without the assistance I really wouldn’t be able to afford a rent/mortgage and all the other expenses right. This is why I feel you have the crime rates you have people are frustrated instead of rewarding good behavior we are rewarding bad. Why can’t we empower people who are trying so hard? I even went to an attorney who stated that it wasn’t the government or societies fault that we had a child with special needs and we could have terminated the pregnancy (which again was extremely hurtful because we weren’t even supposed to be able to have children so when we found out we were having our daughter we were ecstatic) so ultimately the responsibility falls on us. I fully understand that but their are others in this world who knowingly commit a crime. Our hard earned tax dollars goes to feeding them, housing them and giving them healthcare even an organ donation if they should need one. Or for women who have multiple children by multiple men who they say they don’t know who the father is. Technically that isn’t my problem either right?
I believe in United we Stand and I would help my fellow American’s in any way I could this is why I am deeply concerned for our children. Why do the budget cuts have to take away from our children and their families when they haven’t done anything wrong? Do they not have enough to deal with without having to be denied benefits or have them taken away? What happens when we are not here? Who will look out for them then?
https://www.parentingspecialneeds.org/article/guardianship-basic-understanding-parents/
If we invest in them now and cultivate their strengths and aid them with their weaknesses in skills they cannot do or have difficulty doing than maybe with a little assistance they can become mostly independent [7] and help others. An example of this is we have one girl who I know who is 23 yrs. old in age but maybe 14 in mentality she helps out at a daycare center she is great with the younger kids and they love her. My daughter is a computer guru she knows how to do things better than I. I have to ask her to help me with things when it comes to downloading information. If she was given the tools she needs now for the area’s she is lacking in at this time and had the repetition of doing it over and over again who knows what she would be able to do as she becomes an adult. Isn’t this the whole concept behind “No Child Left Behind” but sadly she doesn’t qualify for benefits because technically we make too much money.
Again with all due respect I make what I make because I work 7 days a week 365 a year I may take off some time because of surgeries [8] that she has to have or for sheer exhaustion but other than that I don’t even take off when I am sick because we need the money. My husband works very hard as well but due to the times being as they are right now it has been hard for him to work he is an OTR truck driver and due to the constant stress he has been having some health issues.
https://www.parentingspecialneeds.org/article/being-united-pampering-and-taking-care-of-ourselves/
I have a lot of friends who are now in their later years trying to take care of their children who cannot take care of themselves yes their are homes for these kids but with the budget cuts that have been made you wouldn’t want your pet to stay there. I am really committed to finding answers for our Challenged Citizens.
I feel this is a possible solution. Why can we not establish a very low fixed interest rate for families with challenged children. Each child’s family would have to have medical documentation that their child will be with them for the rest of their lives due to their inability to be on their own. Say they get a mortgage pmt. of $500.00/month they are used to paying say $1000.00/month this would be a $500.00 savings so the bank that holds their mortgage would be able to divide that $500 making $250.00 going back into the household and the other $250.00 goes into a Special needs trust [9] for the child this would not only help the families it would benefit the bank. The bank in turn would be benefiting from the interest being generated by the trust. This way it would empower a family not make them feel victimized or like they are a charity case no one cares about.
I would love for you to meet our daughter so you could see first hand what I am talking about she is truly amazing and I am not just saying that because she is our daughter all of our children are amazing and I think if you could take the time to meet with me and other families with our children you would understand what I am trying so hard to accomplish. I believe in the statement NO CHILD LEFT BEHIND but not just regarding school NO CHILD OR FAMILY SHOULD BE LEFT BEHIND IN LIFE PERIOD.
We are not charity cases, we are not looking for hand outs we are simply trying to give our children the best live possible but we are not immortal so we need a way to establish a real secure future for them. I am sincerely hoping you and your fellow congressman can make this dream a reality. Below you will see a list of families who feel the same way that I do and are desperately looking for a positive change for our precious children, Thank you again for your anticipated time and attention to this extremely important matter.
Sincerely,
Michelle Dee
You May Also Like
- “Instruction Manual” for Your Child with Special Needs [10]
- Guardianship: A Basic Understanding for Parents [11]
- Building a Resource Manual for Future Caregivers [12]
- Medwaiver Program How the Waiver Can Help Your Child [2]
- Drowning in Paperwork? Here’s What Helps Us [13]
- The Politics of Special Education: The Information You Need Right Now [14]
- Special Needs (or Supplemental Needs) Trusts 101 [15]
- Special Needs Planning: What is a Special Needs Trust? [9]
- Common Mistakes Parents Make with Their Special Needs Trusts [16]
- Social Security Benefits: Understanding How To Work? [17]
- Does Your Child Qualify for Supplemental Security Income? Dispelling Misconceptions [18]
- 9 Things You Need to Know to Maximize Your Child’s Benefits [19]
- Able Accounts and Taxes: What Special Needs Families Need to Know [20]
- Able Account or Special Needs Trust: How to Decide? [21]
- ABLE Accounts: 10 Things You Should Know [22]
- Handling Your Child’s Diagnosis: Six Things Parents Should Do For Themselves [23]
- A Special Need Planning Timeline: 9 Steps to a Sound Family Plan [24]
- Plan Early for Your Child’s Long-Term Security [25]
- Able Account or Special Needs Trust: How to Decide? [21]
- How to Select a Special Needs Attorney [26]
- What the Federal Tax Overhaul Means for Families with Special Needs [27]