Re: [NOEWAITORGANIZE] The Emails sent to Geraldo of and her daughter who will bo on Geraldo R

[Guest guest]

Below please find the letters of ONE MOTHER who will be appearing on January

6th with Geraldo to discuss the lack of services and the lack of funding of

services to keep a child with a multiplicity of disabilities at home.

Add your story by writing to Geraldo, or vote at change.giove for full

funding of MEdicaid Waivers, or just discuss this in your communities. But

do something!!!!

Here are the two emails sent by Tracey to Geraldo. I have removed ilast

> names and the first name of the daughter, and addresses, emails and phone

> numbers.

>

> HERE IS THE FIRST LETTER I SENT TO GERALDO.......

>

> THEY CALLED ME LAST FRIDAY TO BE ON THE SHOW... NEXT EMAIL IS MY MORE

> DETAILED STORY

>

> THANK YOU FOR CALLING AND I HOPE I CAN CONVEY YOUR CAMPAIGN.....

>

> SINCERELY,,,

> TRACEY

>

> Subject: from mom in pa about daughter for upcoming show " PA wait list "

> waiver funding mental retardation

>

> Dear Geraldo,

> I am a single mom of a 15 year old child with mental

> retardation along with other disabilities. I have attached a photo of my

> daughter so you can see who I am writing about. I have made attempts to the

> organization " vision for equality " to help me send a story to you for the

> upcoming show the " pa wait list campaign " web site, you are doing to expose

> the terrible adversities the families are facing with endless waiting lists

> for services through the offices of mental retardation for funding. WE ARE

> ONE OF THEM. My daughter has been on the EMERGENCY list for 8 years now, her

> quality of life, opportunity, and future is/have been directly impacted due

> to the miserable failure of lack of services. My story is quite extensive,

> factual, and hard fought to no avail. I could write an email that would be

> too cumbersome to read so I am asking, no begging, for you to contact me

> as it is imperative my daughters' story makes this show. I also have a

> much bigger objective that would help these children immensely with the help

> of Geraldo for a future topic. It is as follows: When a child has MENTAL

> RETARDATION, clearly they have learning problems which requires SPECIAL

> EDUCATION. In addition, they may have MENTAL HEALTH NEEDS, and MEDICAL

> PROBLEMS. My daughter has ALL FOUR OF THESE DISABILITIES. You may be

> surprised to know, NONE OF THESE ENTITIES WORK WITH EACH OTHER . They all

> constantly claim, aside from " there is no funds " , we don't handle that,

> continuously " passing the buck " . While the child is denied the

> comprehensive care and coordination of services they require to THRIVE.

> Leaving the parents HELPLESS. Yet, all of these agencies that receive

> FEDERAL FUNDING , which initially comes out of the same " big pot " so to

> say, once the allocations of funding are split up, ; ; that is the end of

> common thread tying them together. Not to mention, additional funds from

> state and local county levels, just add to the mess and confusion. The

> productivity of all of the of the staff for these FOUR CRITICAL ENTITIES is

> poor at best because the time they waste getting repetitive information and

> massive required paperwork impedes and wastes millions of tax dollars that

> employ them. What needs to be done is similar to what JOHN WALSH did for

> children of violence with law enforcement. THESE KIDS NEED TO BE REGISTERED

> IN A COMMON DATABASE, UNIVERSALLY USED BY ALL FOUR ENTITIES. It's that

> simple. I would live on the doorsteps of Washington for as long as it takes

> to get this motion started. I have the obstacle of needing to care for my

> daughter daily which if I had assistance from you, I could be the VOICE of

> so so so many parents out there to help initiate and see through a BILL that

> is SO DESPERATELY NEEDED FOR THESE CHILDREN. I am familiar with the courts

> and appeals boards for insurance companies and know how to succeed in

> keeping the services I do have. Please, please at least contact me if for

> anything so my daughters story for the " waiting list " for mental retardation

> can be heard. My name is:

> Tracey

>

>

> My daughter is 15 years old, with Intractable mixed seizure disorder

> suddenly afflicted at the age of 4 years , idiopathic in nature, as a result

> afflictions of mental retardation, behavior disorders, severe learning

> delays and special education have ensued.

> I am single mother (divorced due to stresses of disabled child)

> 42 years old, unable to secure employment due to the 24/7 needs of my

> daughter, and no family, church, community help available to assist in her

> care taking needs. I have successfully managed to keep the medical services

> through appeals and I am capable of making a difference on federal levels

> for these children given the chance!! Thank you for your time and I

> anxiously await your phone call.

>

>

> Sincerely,

> Tracey

>

> HERE IS THE NEXT EMAIL... WAITING TO HEAR FROM FOX NEWS/JOEY,,,,,HE SAID

> GERALDO WILL BE READING ALL STORIES ON WEDNESDAY AND I GUESS PRIORITIZING

> THEM?????

> REGARDS,,,TRACEY

>

> WE ARE BEING PICKED UP BY SHOW ON SAT. DEC. 20TH GOING TO NEW YORK FOR

> TAPING AND SHOW IS SUPPOSED TO AIR JAN. 6TH...THANKS!!

>

> Additional information for upcoming show mental retardation/waiver

> funding per our phone conversation last Friday

>

>

> Dear ,

> I still am so happy and grateful you called. I enjoyed our

> phone conversation and appreciate your understanding and consideration. When

> I stated " you made my weekend " , was an understatement at best. Your phone

> call and this opportunity is probably the most significant I have ever had

> for the past 11 years. I look forward to speaking with you again soon.

>

> Here is the additional letter for Geraldo detailing further about my

> daughter and the mental retardation system. Please let me know your

> thoughts and any changes you would like me to make...

>

> Sincerely,

> ; Tracey

>

>

>

>

> HERE WE GO::::::::::::::::::

>

>

>

>

> Dear Geraldo,

> My name is Tracey. I am a single mother of a beautiful 15 year old

> daughter. She will be turning " sweet sixteen " on December 17th. She is a

> multiply disabled child consisting of : Intractable mixed seizure disorder

> (currently averaging over 500 seizures per month), moderate mental

> retardation, behavior disorder, severe developmental and learning delays.

> She requires comprehensive consistent intervention to learn, thrive, and

> have opportunity to achieve basic goals of daily living. She has been denied

> many of these basic necessities since the onset of her illness in 1997.

> She has been registered with the Office of Mental Retardation for 10 years.

> The PUNS form was listed for CRITICAL the first two years, and EMERGENCY and

> " waiting list " for WAIVER FUNDING for past 8 years. There are many obstacles

> my daughter faces to have a quality of daily life. These have escalated due

> to the failure of Waiver Funding provided for her, which she easily meets

> and well exceeds the criteria to receive. Over the past 11 years with the

> natural progression of development, the absences of services waiver funding

> provides has severely impeded progress and allowed regression , all areas of

> her life. The effect on myself as her mother, is that I must address all of

> her needs in all areas daily, making it impossible for me to maintain

> employment and unable to go anywhere for more than a 12 hour period of time

> including every weekend not receiving intervention of any kind. Here are

> just a few difficulties: Her home is unsafe and fails to allow her ability

> to perform daily tasks without assistance. Home modifications are

> desperately needed. She requires 24/7 trained supervision for multiple

> reasons. The nursing care approved through Medicaid, historically has been

> inconsistent and not staffed. Trained aide supervision for training of daily

> life skills, safety awareness, self care, housekeeping skills, human

> development has never existed. Comprehensive behavioral intervention to

> address compliance with tasks from the moment she wakes up to the moment she

> goes to sleep *SHE NOW NEEDS *to comply and learn such as: get up at

> required time, get dressed , brush teeth, brush hair, wash face, eat, get

> coat on, get school bag, get on bus, sit down, put seat belt on,(this is

> just the first hour of her day), has never existed. Respite care to provide

> time for me to " breathe " , attend/pursue critical training's & meetings to be

> an advocate for my daughter, has never existed. Unless you are=2 0able to

> physically and diligently pursue all of the resources and supports relating

> to my daughters disabilities, what they claim to provide becomes * " A BUNCH

> OF WORDS WELL WRITTEN " . *

> Consolidated Waiver services would provide consistent,

> *tangible*

> services to all of the above, allowing my daughter to have *equal access

> to quality of life. *

>

>

> To complicate matters, the high turnover, false and lack of information

> provided, lack of required communication to update PUNS and ISP's (I have

> recent ly discovered the office of mental retardation has been updating

> these forms, without my input, knowledge or approval), failure to attend IEP

> meetings as a team and comments that " She won't get any Waiver until she is

> over 21 " , has alienated me

> *. I am left feeling the mission of the office of mental retardation is

> not to SERVE these children who don't have a " voice " and can't advocate

> for themselves, but to INSTITUTIONALIZE them in their OWN HOMES*.

>

>

> Desperately seeking assistance,

> Tracey

>

>

> *End the Colorado Wait List for Individuals with Developmental

> Disabilities NOW

> 12,000 Children and Adults with Autism, Cerebral Palsy, Down Syndrome and

> Mental Retardation Need Your Help*

>

>

>

> ------------------------------

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10>

> .

>

--

Sara - Life is a journey- we choose the path.