Jake Needs a New Wheelchair or Major Repairs

Medicare has denied a new chair and repairs for my son, Jake. Medicare replaces wheelchairs every 5 years. Jake has had his wheelchair for over 5 years (6/2014). 

Jake either needs a new wheelchair or his current wheelchair requires major repairs and a growth adjustment. Repairs are about $7000 and a new chair around $14000. Jake has a history of skin breakdown and pulmonary edema. We hope Medicare will reconsider, but right now we have no other resources. 

GoFundMe Link to help Jake raise enough money for wheelchair repairs or a new chair. Thank you.

Jake's Wheelchair on December 3, 2019

I hate asking for help, but I am going to try to raise the money while challenging Medicare's decision. We have asked the Ombudsman to intervene.

I am a senior citizen on a fixed income and did not prepare for such catastrophic costs. Please help.

Thank you.


History
Jake is my son. He was born in 1988. By 6 months we were told he had Cerebral Palsy. As Jake grew older we learned he was a quadriplegic, but blessed with the ability to talk. He requires total assistance with all his other needs. I promised Jake we would stay together and make it.

I completed my Doctorate Degree and worked as a College Program Director. I raised grant monies for Meals on Wheels for the elderly, disabled, and people with AIDs.

For over 30 years as a single mother, I worked a full-time job and 4 part-time jobs. I paid my taxes, Medicare, and Jake's medical bills.

It is not easy to ask for help. I will work to raise money if necessary. If you need a Registered Dietitian Nutritionist please let me know. I work from home.

Also, in the event, we raise more money then we need - we will denote the money to others needing wheelchairs.

Thank you again.
Sandra and Jake Frank

recipenews@gmail.com

Using Modern Technology to Provide the Disabled Independence

Jake with Kristi Krueger, medical reporter and news anchor for Channel 10 (WPLG), Rich (friend), and Devon from the Creation Station at the Broward County Library. Jake always wanted to be a gamer, but controllers were not made for a quadriplegia. With some research, a dear committed friend, a volunteer at the Creation Station at the Broward County Library, and a 3-D printer they created an adaptive controller.




To hear Jake laugh with a sense of accomplishment is what all mother's want to hear. 


 Story on using modern technology to provide the disabled independence 

MDA Telethon September 1, 2013

Sunday, September 1, 2013 Check Local Listings

To make a donation, click the link for MDA.

MDA SHOW of STRENGTH

We are grateful for the years of dedication and the contributions Jerry Lewis has made to fight Muscular Dystrophy. To Jerry and his kids.

To make a donation, click the link for MDA.

Where Telethon Dollars Go

The Telethon is the single most important fundraising event of the year for MDA. Funds raised help the Association carry on its fight against muscular dystrophy, ALS and related diseases, including a worldwide program of basic and applied research, a nationwide network of comprehensive medical and support services, and extensive professional and public education. Children and adults with muscle-damaging diseases benefit directly from dollars raised during the Telethon.

Strolling through the Archives of MDA 

Early MDA telethon, mid-1960s.

 

Jerry Lewis and Dean Martin 

Reunion on the MDA Telethon

Dean Martin and Jerry Lewis reunite after twenty years on the 1976 MDA Jerry Lewis Telethon. Frank Sinatra surprises Jerry by bringing on Dean and then some nervous and hilarious clowning between the two ensue. This is followed by a medley of American Standards by Dean and Frank. In two parts, this is the complete segment of the reunion. An important and historic piece of entertainment history.

Sammy and Jerry Friendship

from 1987 MDA Telethon

A Dedication to Mattie Stepanek

 (7/17/90-6/22/04)

Mattie Stepanek was a 13 year old boy who had a rare form

of muscular dystrophy. He was a poet, a peacemaker, and a hero.

The song is "He Was Just Like Me" was written and recorded by

Mattie's friend Madison Cross in memory of him.

Muscular Dystrophy Association (PBS)

Abbey Umali - Jerry Lewis

MDA Telethon Collection

Abbey Umali Opens the 2010 Jerry Lewis MDA Telethon

To make a donation, 

click the link for the MDA website.

May 3, National Specially-Abled Pets Day

National Specially-Abled Pets Day

National Specially-abled Pets Day celebrates these amazing and heroic animals, helps to educate the public about caring for disabled pets and find homes for orphaned, specially-abled pets.  Pets that become challenged due to disease, birth flaws or injuries, tend to develop greater senses than your average pet. Most of the time it's as if they never had to readjust to life and we need to keep up with them!"

Celebrated nationally and internationally on May 3rd, National Specially-abled Pets Day encourages adoption always and for people who would like to bring a new furry family member home, to consider a specially-abled pet.

Blind Golden Retriever gets Guide Dog

Frankie, the Walk 'N Roll Dog

A true, inspirational story about a dachshund whose life started out just like any other dog walking on all four paws until a spinal injury leaves her paralyzed. Frankie is custom-fitted for a wheelchair and learns to keep on rolling. Her zest for life will have you cheering and she will give you hope that all things are possible. Frankie will leave an everlasting and loving paw print on your heart. A book for all ages to teach overcoming challenges and also compassion for the physically challenged.

Book Trailer

 

National Best Book by USA Book News for children's picture book soft cover

Merial Human-Animal Bond Award by Dog Writer's Association of America

Editors Choice Award by Allbooks Review

Indie Excellence Finalist

Frankie inducted into 2009 Wisconsin Pet Hall of Fame

To learn more about Frankie, the Walk'N Roll Dog, visit: Joyful Paws

Facebook: Frankie the Walk N Roll Dog

FL Governor Scott, looking to warehouse disabled children rather than helping parents care for them.

This is a video from msnbc.com (http://tv.msnbc.com/2013/01/10/governor-rick-scotts-disregard-for-the-health-of-floridians/ ). Rep. Alan Grayson, D-Fla., joins Martin Bashir to discuss the decision of Florida governor, Rick Scott, to effectively warehouse disabled children rather than helping parents care for them.

My son, Jake and I chose to watch it together and video tape it. Jake is 24 years old with cerebral palsy. He moves about independently in a motorized wheelchair. We were devastated by what we heard and saw.

Is it constitutional to separate a parent from her child because they are disabled? This seems wrong and criminal. Similar to the stories my parents told me about Adolf Hitler.

Governor Scott, you will never know the experiences, challenges, joys and most of all the love from a special group of people that have so much to give.

Dr. Sandra Frank and Jake Frank

Are Legislators becoming the New Primary Health Care Providers?

Friday, December 7, 2012
Today, I was overcome by emotion - needing to vent. I called the Florida Attorney General's Office looking for resources to help fix my son's wheelchair and to file a Medicare and Medicaid fraud complaint.

My son Jake is 24 years old and was born with cerebral palsy. He is a quadriplegia and moves about independently in a motorized wheelchair. Jake has outgrown his wheelchair, but he does not qualify for a new chair because there is a 5 year clause before a wheelchair can be replaced. 

This week Jake fell out of his chair because it is too small. He hung by the seat belt for nearly 4 hours before I discovered him. Foam was coming out of his mouth and he was having difficulty speaking - it looked like he had a seizure. Two days later he started to develop cellulitis of the lower extremities  One DME Company refused to fix his chair because we didn't have the money (Medicare said we shouldn't have to pay them) and the other company was only interested in selling us a new wheelchair. 

When I spoke to the Florida State Attorney’s Office, they said look to our legislators to help my son. Though they did refer our complaint to the fraud division; we still did not know who to contact to fix Jake’s wheelchair. 

Then we called Jake’s caseworker, he also recommended we seek help from the legislators. As I cried asking who can fix the wheelchair – there was no response and I just hung up the phone. 

I finally reached Jake’s doctors office. I explained what had occurred and asked if they knew of a company that could help fix Jake’s wheelchair. I heard those words again; “The problem is the legislators….”

My son was being denied medical care in the United States of America because we didn't have money for health care. 

Finally out of desperation, I called Congressman Ted Deutch. I thought it strange I would have to go to our legislator as a Primary Health Care Provider. Is this what the new Health Care is all about - Seeking out our legislators to obtain medical care? 

My heart is breaking watching Jake deteriorate unnecessarily. Do you realize people are dying because a bunch of supposed grown-ups on Capitol Hill can’t agree? If my son’s condition worsens, the legislators only have themselves to blame. God save us from all of you.

Jake's Mother

PS. I apologize if my letter is harsh. It has been five days since I've slept. I lie awake watching Jake sleep; making sure he does not fall out of his chair and readjusting his feet so they stay elevated. I am very tired.

December 3, International Day of Persons with Disabilities, Challenges of Feeding

The International Day for Persons with Disabilities 

From United Nations Enable "Persons with disabilities make up an estimated 15 percent of the world’s population. Almost one-fifth of the estimated global total of persons living with disabilities, or between 110-190 million, encounter significant difficulties. Furthermore, a quarter of the global population is directly affected by disability, as care-givers or family members.  Persons with disabilities often face barriers to participation in all aspects of society. Barriers include those related to the physical environment or to information and communication, or those resulting from legislation or policy, or from societal attitudes or discrimination. The result is persons with disabilities do not have equal access to society or services, including education, employment, health care, transportation, political participation or justice. Evidence and experience shows when barriers to inclusion are removed and persons with disabilities are empowered to participate fully in societal life, their entire community benefits. Barriers faced by persons with disabilities are, therefore, a detriment to society as a whole, and accessibility is necessary to achieve progress and development for all.

Accessibility and inclusion of persons with disabilities are fundamental rights recognized by the Convention on the Rights of Persons with Disabilities (CRPD). The CRPD (Article 9, accessibility) seeks to enable persons with disabilities to live independently and participate fully in all aspects of life and development. It calls upon States Parties to take appropriate measures to ensure persons with disabilities have access to all aspects of society, on an equal basis with others, as well as to identify and eliminate obstacles and barriers to accessibility.

In spite of this, in many parts of the world today, lack of awareness and understanding of accessibility remains an obstacle to the achievement of progress and development through the Millennium Development Goals, as well as other internationally agreed outcomes for all.

As a parent of a child with disabilities and a Registered Dietitian my goals are to provide Jake as many tools and resources to allow for maximum independence; while providing nourishing meals. Through mistakes, observations, experiences and the help of very wise health professionals we adapted our environment to achieve these goals. Lately, I've noticed the goals need to be revised  as Jake gets older. 
1. Utensils were not used in our home for a long time, except when we had guests over. Jake and I ate a lot of finger foods. It was difficult for Jake to hold the utensils. As I watch Jake get older, I have noticed his muscles getting tighter. He now asks for help in feeding – most of the time. 
2. For drinking, we use a weighted cup base, this is to prevent spills. We would place a cup inside with a flexi straw and Jake would be able to drink on his own and whenever he would like. Lately, I've noticed a lot more spills.
3. Jake loves to dine out and have dinner parties. I never had to worry about getting him to try new foods. Jake is a culinary explorer.  
4. I love his understanding of food and nutrition. Jake has a wonderful sense of taste, as he combines different flavors. He creates meals based on colors, designs, and nutrition. Jake is my inspiration, as can be seen in my art and photography. 

___________________________

Assistive technology to facilitate independent eating and drinking

The first video describes feeding challenges encountered by persons with disabilities and the advances in assistive technology. It’s not an endorsement of the Mealtime Partner Dining System, but the video shows good examples of challenging eating/feeding situations. 

Quadriplegic Eating Utensils

The 2012 Theme:

“Removing barriers to create an inclusive and 

accessible society for all.”

Don't Plan for Persons with Disabilities, 

Create Activities Together and Let Everyone Get Involved.

 -Jake's Mom

Resource.

United Nation Enable, International Day of Persons with Disabilities