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December 28, 2017 www.gofundme.com/TeamJon 

Season's Greetings!

Boy, time does, indeed, fly...! It's hard to believe that it's already been a year since the last TeamJon newsletter. In the interim, it has been a busy year for Jon and I.

Perhaps the biggest change occured in the Spring when Jon was discharged from his previous skilled nursing facility in Snohomish because of his increasing respiratory needs. After a seven week stay at the University of Washington Medical Center, we were able to find a placement for him at Bailey-Boushay House in Seattle.

BBH is truly a one-of-a-kind facility! The level of staffing resources and high quality of care have created a unique residential experience. Jon has settled in very nicely, and feels very much at home. While the progression of Jon's neuro-muscular disease has fortunately been slow, the scale and scope of Jon's nursing care needs do continue to increase. Because of this, we feel blessed that Jon has been able to secure a placement in such an outstanding facility.

By the way, Jon enjoys hosting visitors for movies, meals, etc., and likes to give tours of his new home. So, if you happen to be in the Madison Valley neighborhood, be sure to stop by!

TeamJon Joined in the Seattle "Walk to Defeat ALS" for a Third Year

TeamJon 2017 ALS Walkers

Our very heartfelt thanks to all of the walkers and donors who helped make our third year participating in the Seattle Walk to Defeat ALS such a success. Although smoke from nearby forest fires in the Cascades sidelined a few of our walkers, we still set a new record for donations raised by our team!

Jon and I would also like to thank the Evergreen Chapter of the ALS Association for honoring us with Certificates of Appreciation (below) for our efforts as Team Captains for the 2017 walk. It is our sincerest pleasure and priviledge to be able to return some benefit to such a wonderful organization that provides so many essential services to clients, including Jon.

Jon's ALS Association Certificate

SAVE THE DATE!

The 2018 Seattle Walk to Defeat ALS will be held on Saturday, September 8th. Please plan to join us as we walk for a fourth year in beautiful Seward Park in support of a very worthy cause.

To learn more about the Evergreen chapter of the ALS Association and the valuable work that they perform, please visit their website at: www.alsa-ec.org

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Paid Family Caregiver Project Update

As I've shared in previous newsletters, Jon and I have been working over the last several years to bring about a change in existing Washington state policy to allow Medicaid long-term care clients the ability to select their spouse or a parent (for minor children) as their paid caregiver. Why this ability is so critical is that the scope of care required by an ill family member frequently prevents the family caregiver from other employment, but the inability to be paid for the care that they provide, creates an extreme financial burden for already vulnerable families.

Jon at Washington State Capitol

Over the past year, I've written to all the state legislative members to raise awareness of the issue. I've also met with a number of key legislators to discuss how best to move this issue forward in the legislature.

I'm happy to report that these efforts have begun to bear fruit, and that this issue is finally beginning to receive some much needed attention in the legislature. A bill was introduced in the last legisative session that directed DSHS to begin developing a waiver program option to pay family caregivers. Unfortunately, the final version of this bill was diluted to simply refer the issue to a joint legisative committee for further consideration.

On November 30th, Jon and I travelled to Olympia to provide testimony to the Joint Legislative Executive Committee for Aging & Disability. While I provided information from research of existing programs in other states, Jon did an excellent job sharing how our family had been impacted by the existing policy. His testimony in particular provided the 'heart' for the issue, and encouraged several legislators to stress the need to increase the priority for enacting a waiver option.

Of course, a lot of work still needs to be done, and the ability for spouses and parents to be paid for the care that they provide is likely still several years away; yet the progress is encouraging!

Finally...

As the days shorten and winter approaches, it is fitting that we reflect on the multitude of blessings that we each have been given in the preceding year. Among our greatest blessings, Jon and I count our circle of wonderful and loving family & friends. Thank you for your continual care and encouragement throughout the year and please accept our best wishes for a very warm & serene holiday season and a happy & prosperous new year!

Alan

Disco Wreath

Please help us continue to build his community of supporters by sharing this Newsletter with your community of family and friends. The link to this newsletter can be found by clicking for the online version at:

Current TeamJon Newsletter

If you are on Facebook, please "Like" and "Share" the TeamJon Facebook page, and encourage your friends and followers to visit the page at:

www.facebook.com/TeamJon.org

Also, Jon has many ongoing special needs as well as wishlist items that greatly enhance his quality of life. If you would like to contribute to the purchase of some of these items, please visit the TeamJon GoFundMe page at:

www.gofundme.com/TeamJon


About TeamJon

The goal of the TeamJon campaign is to promote awareness, build a community of support & provide financial assostance for Jon Howe, a severely disabled man living in a skilled nursing facility in Snohomish, Washington. Jon has been clinically diagnosed with ALS or a related Motor-Neuron Disease. He also has over a dozen other serious medical conditions including: an inherited Primary Immune Deficiency, Epilepsy, Chronic Demyelinating Polyneuropathy, Macular Degeneration, Severe Chronic Pain and multiple forms of Arthritis and Spinal Degeneration.

To subscribe or unsubscribe to this newsletter: Please send an email with "Subscribe" or "Unsubscribe" in the subject line to: Alan@TeamJon.org



TeamJon
16212 Bothell-Everett Hwy F282
Mill Creek, WA 98012