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

October, National Down Syndrome Awareness Month Joan E. Guthrie Medlen, RD and Down Syndrome Nutrition

Every October, the National Down Syndrome Society (NDSS) reminds the world in a big way about the gifts that people with Down syndrome bring to their communities through a special video presentation on a jumbo screen in the heart of the Times Square.
  

The Times Square Video presentation kicked off Down Syndrome Awareness Month on the morning of the New York City Buddy Walk. This year, our third-party volunteers chose over 200 photos from over 1,000 submissions for the Times Square Video. The featured photographs highlight children, teens and adults with Down syndrome working, playing and learning alongside friends and family. These collective images promote acceptance and inclusion, which is the foundation of NDSS and the National Buddy Walk Program.

Joan Guthrie Medlen, M.Ed, RD and the
Down Syndrome Nutrition Handbook

Joan E. Guthrie Medlen, a mother of a child with Down syndrome, a registered dietitian, and the author of “The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy Lifestyles,” encourages parents to start teaching healthy habits early but stresses that it's never too late to start, no matter what age.

Joan became involved in issues related to people with Down syndrome after the birth of her son. “As we all know, parents of kids with disabilities are involved in the big picture immediately – like it or not! I chose to work in the field of nutrition/health promotion for people with Down syndrome over 16 years ago. It’s a choice I've not regretted.” 

Introducing Cooking By Color: 

Recipes for Independence by 

Joan E. Guthrie Medlen, RD

Meet a family who shares
their amazing story of love and living.

About Buddy Walk

The Buddy Walk® was established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome. Today, the Buddy Walk program is supported nationally by NDSS and organized at the local level by parent support groups, schools and other organizations and individuals.

August 5-11, 2012 International Assistance Dog Week

A Tribute To Service / Assistance Dogs

International Assistance Dog Week was established due to the efforts of Marcie Davis, a paraplegic for over 35 years and CEO of Davis Innovations, a consulting firm based in Santa Fe, NM.

International Assistance Dog Week

Davis is the author of “Working Like Dogs: The Service Dog Guidebook,” and she is the host of the Internet radio program, “Working Like Dogs,” at http://www.petliferadio.com/.

International Assistance Dog Week was created to recognize all the devoted, hardworking assistance dogs helping individuals with disability-related limitations.

The Assistance Dogs help transform the lives of their human partners with physical and mental disabilities by serving as their companion, helper, aide, best friend and close member of their family.

The goals are to recognize and honor the assistance dogs; raise awareness and educate the public about how these specially trained animals are aiding  people in our communities; honor the puppy raisers and trainers of assistance dogs; and recognize heroic deeds performed by assistance dogs in our communities.

America's VetDogs CFC

Description of the Various Types of Assistance Dogs

Guide Dogs. Assist people with vision loss, leading these individuals around physical obstacles and to destinations such as seating, crossing streets, entering or exiting doorways, elevators and stairways.

Service Dogs. Assist people with disabilities with walking, balance, dressing, transferring from place to place, retrieving and carrying items, opening doors and drawers, pushing buttons, pulling wheelchairs and aiding with household chores, such as putting in and removing clothes from the washer and dryer.

Hearing Alert Dogs. Alert people with a hearing loss to the presence of specific sounds such as doorbells, telephones, crying babies, sirens, another person, buzzing timers or sensors, knocks at the door or smoke, fire and clock alarms.

Seizure Alert/Seizure Response Dogs. Alert or respond to medical conditions, such as heart attack, stroke, diabetes, epilepsy, panic attack, anxiety attack, post-traumatic stress and seizures.

Medical Alert/Medical Response Dogs. Alert to oncoming medical conditions, such as heart attack, stroke, diabetes, epilepsy, panic attack, anxiety attack, and posttraumatic stress disorder.

Assistance dogs are allowed to accompany their human partners to places of business including restaurants and shops. Under state law and the Americans with Disabilities Act (ADA), they are guaranteed equal access to any and all establishments and accommodations; no extra charge can be levied because of the dog.

Resources.

International Assistance Dog Week (www.assistancedogweek)
Working Like Dogs (http://www.workinglikedogs.com/)

Assistance Dogs International (http://www.assistancedogsinternational.org/)
International Association of Assistance Dog Partners (http://www.iaadp.org/)

March 21, World Down Syndrome Day Nutrition Resources

March 21, 2012 marks the 7th anniversary of World Down Syndrome Day and for the first time the United Nations will officially observe this event. Down Syndrome International encourages people all over the World to help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities. 


Being a parent of a special needs child made me aware of my amazing gift and journey. The following videos are a window into how other families share their blessings.

Being a dietitian, I look for ways to make feeding an enjoyable experience.  View the nutrition resources to achieve a positive nutrition outcome.

International Down Syndrome Coalition

 

Meet a family who shares
their story of love and
living through a beautiful song.
 

Visit the following link to learn more about 
World Down Syndrome Day. 

Nutrition Notes.
From Helping a child with Down syndrome learn self-feeding skills, WebMD.

Down syndrome often affects the muscles in the mouth, causing the tongue to stick out. This may interfere with feeding, including breast-feeding, bottle-feeding, and eating solid food. Most children overcome these types of problems, although they will likely master eating skills at a later age than other children.

Believe in Your Dreams, 2012

Believe in Your Dreams, 2012

Sometimes it's difficult to find your way,
but when you have friends and family to guide and support you
- it makes life easier.