Truth, Lies and Tracheostomies

 Posted by on February 11, 2017 at 6:30 PM  Awareness, Care
Feb 112017

When neuromuscular disease weakens the muscles used for breathing, many people benefit greatly from noninvasive ventilation (NIV), which can add years of breathing support.

But when a tracheostomy and ventilator are suggested for better breathing, some people see NIV as “enough” and a trach and vent as somehow “too much.”

When a person’s overall quality of life is no longer acceptable, that’s certainly a valid choice. But a trach and vent shouldn’t be ruled out if quality of life problems are due in large part to respiratory problems.

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Author: Diane Huberty Publication: MDA Quest Magazine Date: 06-30-2007

Need Your Insights on Telehealth and Telemedicine

 Posted by on October 20, 2016 at 8:14 PM  Care, Medical
Oct 202016

The National Disability Forum is an open conversation where members of the public, community leaders, and Social Security employees come together to talk about the disability programs.

Next National Disability Forum will Focus on Telehealth and Telemedicine

Telehealth includes a variety of ways to use video and other technology to enhance healthcare and related information delivery.  Telemedicine involves clinical services provided by interactive communication, most commonly a video, between a patient and a practitioner at different locations.

You can share your insights on these question by posting right here on our blog or at ourIdeaScale online tool, or by registering to attend the forum on October 27.

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Author:  Publication: Social Security Blog   Date: 10-11-2016

Oct 152016

A federal judge in Fort Lauderdale, Fla. has tossed out of court alawsuit filed three years ago by the U.S. Department of Justice that claimed Florida health administrators had acted with “deliberate indifference to the suffering” of children with disabilities who were being warehoused in nursing homes for lack of more appropriate accommodations with family members or in the community.

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Author: Carol Marbin Miller, The Miami Herald Publication: Disability Scoop Date: 09-26-2016 

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Sep 012016

Pokémon Go is a free location-based app developed by Niantic for both iOS and Android devices. It encourages users to explore their environment by using augmented reality while simultaneously trying to capture as many Pokémon as possible.

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Author: Kendall Rayburn  Publication: Friendship Circle Date: 07-21-2016 

Aug 122016

Being the sibling of a special needs individual comes with a lot of “extras” and sometimes this can be difficult to navigate on your own.

This is a list of books people who have a sibling with special needs might be interested in.

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Author: Kendall Rayburn  Publication:  Friendship Circle Date: 08-04-2016

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Jul 112016

Wisconsin Department of Health Services Interim Secretary Tom Engels announced the Family Care and IRIS(Include, Respect, I Self-Direct) programs launched today, July 1, as scheduled in Rock County. The expansion of these programs to Rock County helps ensure more than 400 residents get the long-term care services and support they need, and will put an end to the waiting list for those services within three years.

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Publication: Department of Health Services Wisconsin News Release Date: 07-01-2016

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May 242016

Motor fluctuations are “off” times, when medication — namely levodopa (the “gold standard” treatment for Parkinson’s) — is not working optimally and Parkinson’s symptoms …

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Author: Rachel Dolhun, MD Publication: The Michael J Fox Foundation FOXFEED Blog Date: 05-23-2016


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May 172016

A year and a half after legislation paved the way for people with disabilities to save without jeopardizing their government benefits, the first accounts are poised to become available.

A handful of states are expected to open their so-called ABLE programs this summer.

Nebraska is the first to announce a launch date — June 30

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Author: Michelle Diament  Publication: Disabilities Scoop  Date: 05/10/2016

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Long-term Care 2.0 Final Concept Paper

 Posted by on April 6, 2016 at 6:07 PM  Care
Apr 062016

The Department of Health Services of Wisconsin (DHS) has released two documents in the last couple weeks regarding Long-term Care 2.0. The first document is what they call Family Care 2.0 / IRIS 2.0 Concept Paper. This document is the second and final version of what DHS has planned for long-term care in Wisconsin. This document must now be approved by the Joint Committee on Finance. The legislative session in Wisconsin ended on April 1, but I’m not sure how this will affect the vote of the Joint Committee on Finance. The second document is contains frequently asked questions relating to the concept paper. To keep informed on changes regarding Wisconsin Long-term Care 2.0 visit the web site that DHS has setup for this issue.
View Concept Paper
View Concept Paper Frequently Asked Questions
DHS Website

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Long-term Care 2.0 Omni-direction

 Posted by on April 6, 2016 at 5:39 PM  Care
Apr 062016

In the new Long-term care 2.0 members receiving care will be able to pick between total self-direction or totally managed care for each service they receive.
In my opinion it shouldn’t be self-direction vs. total managed care for each service. It should be about people with disabilities and frail elderly being people not a number.
When I was looking for a massage therapist I was having a difficult time finding one. This is because I am self-directed on IRIS. Iris would not even give me a list of massage therapist vendors already signed up with IRIS. I did find a vendor eventually, that I Trust, after weeks of searching, emailing, and telephone calls. I imagine if I was on family care I would not have been able to choose the massage therapist because it would be totally managed.

In my opinion there is no reason care with regard to be able to choose or having no choice: the dynamic instead. It should not be total self-direction or total managed care. Instead the conversation should go something like this.

Care Team: You have been approved for massage therapy.

Member or Member Representative: That’s great.

Care Team: Do you have a massage therapist in mind?

(Member Can Yes or No)

Member: Responds Yes (care team says OK lets do the paperwork to see if they can be a vendor.

Member: Responds No (care team says OK we will work with you to find to you a massage therapist we can also give you a list of possible vendors that are already on our payroll for you to review. ) At this point, for any point, the member should be able to have any type of help in choosing the massage therapist.

By having this all or nothing self-direction or total managed care dichotomy it refuses to treat people with disabilities and frail elderly as actual people.  Members shouldn’t have to decide one or the other, we should just be treated as individuals that might want to be involved and other times we just might need a little bit more help. There are all types of scenarios like I talk about above. I call this omni-direction at any time you can change how much self-direction based on conversations not paperwork. The whole process of directing a person’s life should be flexible enough to allow for anywhere between self-direction and total managed care depending on the persons needs and opinions.

Omni-direction would be much more simple than having to add two different processes for directing member cares. This dynamic process would most likely save even more money. Having a conversation instead of all or nothing regarding self-direction simplifies the process.

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