It’s hard to believe how quickly the days of Summer are passing by. I hope that everyone is finding opportunities to enjoy the long, beautiful days of the season, whether it is working in the garden, taking in some of the many Summer festivals, or some other pleasurable activity.
For those not in the Pacific Northwest, we have been having one of the most protracted mild Summers that I can remember in my 35 years in the region. Our days have been beautiful and mild, and ours nights have been cool enough to require closed windows and the occasional blanket. Given the extreme weather that most other parts of the nation has been experiencing, those of us living in the Northwest are blessed with a mild climate.
Jon's Medical Update
It’s been awhile since the last TeamJon newsletter, and there have been some big changes in the interim. Perhaps the biggest change is Jon’s recent transfer to a skilled nursing care facility.
This is a step that Jon and I have struggled against for some time. I have always wished to provide Jon with the care that he requires at home for as long as possible.
Because of Washington's State Medicaid agency rule prohibiting clients from selecting spouses as their paid caregiver, it has become financially impossible to continue to provide care to Jon in a safe and stable home setting.
Fortunately, we've been very lucky to find a wonderful facility that had an available bed for Jon. Located in a safe and quiet neighborhood in the scenic, historic town of Snohomish, WA; Snohomish Health & Rehabilitation is very pleasant and features a beautifully landscaped courtyard.
Perhaps the greatest blessing is the extraordinary dedication and care that all of the staff have shown Jon since he was admitted. An example of that care was the decision to move Jon into a private room from the semi-private one that Medicaid would pay for.
One of the great stresses of moving into a skilled nursing facility is the loss of autonomy. This generous act has allowed Jon to have some of his possessions with him and to create a personal space. This is a wonderful blessing and we are very grateful!
Jon welcomes company, so if you happen to be in the Snohomish area please feel free to stop by for a visit. Though to make sure that he is available during the time that you would like to visit, please be sure to contact him first. He can be reached via his phone or email address at: firstname.lastname@example.org
The facility/Jon's address is:
Snohomish Health & Rehabilitation
800 Tenth Street, Room 13
Snohomish, WA 98290
TeamJon Crowdfunding Campaign Update
Since the last newsletter, our attention has been focused on pressing issues, such as the increasing complexity of Jon's medical care and other immediate needs. Unfortunately, this has meant that I have not been able give the attention to growing the crowdfunding efforts for Jon's Special Needs Trust, (SNT). Despite Jon's admission into a skilled nursing facility, he still has many special needs that are not covered by insurance and are beyond our ability to purchase without the generous donations to his SNT.
Jon and I would like to share a heartfelt "thank you" to everyone who have taken the opportunity to contribute to Jon's SNT. Your generosity has helped us cover household bills on a lean budget and has also allowed us to purchase much of the additional medical equipment and supplies that Jon's would otherwise have been forced to do without. Again, THANK YOU for your care and generous support!
In addition to making a general donation to Jon's SNT, we've been asked by a few folks if there were particular items that Jon's needed or wanted that they could contribute toward. So, we decided that in order to assist anyone wanting to donate toward a specific item, we would begin publishing a "wishlist" of items that Jon currently needs or wants. The following items are things that Jon has identified as his most pressing needs.
- AAC Essentials package on iTunes for iPad and iPhone. This package provides a collection of apps for individuals who need an Augmentative and Alternative Communication (AAC) solution to communicate. iTunes - $299. The package saves nearly $100 if each of the programs were purchased separately. It contains the folowing apps:
- Proloquo2Go - A customizable symbol-based speech synthesizer that makes it easy to form sentences quickly using icons.
- Proloquo4Text - A text-based speech synthesizer that I can use when the words I need are not in the graphical program.
- Keedogo and Keedogo+ - Specialized onscreen keyboards for people with tactile difficulties.
- NEMO Fillo Backpacking Pillow - A compressible pillow that can travel with my wheelchair for naps. REI - $39.99. Click here for product page.
- Pro Club Fleece Cargo Sweatpants - Size XL, Gray, Black, or Tan. Amazon, $31.00. Click here for product page.
- Logitech M750 wireless trackball - easier for a person with reduced manual dexterity to use than a mouse. Amazon, $26.95. Click here for product page.
Calling All Musicians - TeamJon is creating a Music Project!
I'd like to take this opportunity to introduce a new project to benefit Jon's Special Needs Trust. Over the coming months, I'm going to be developing a music anthology CD. With the working title of the "House Blend Anthology"; this CD is the first volume, of what I hope will be a series of CD projects to benefit Jon's SNT and other select charities.
As noted above, while Jon's care needs have become increasingly complex, his placement into a skilled nursing facility was neccessitated primarily by our financial inability to continue his care at home. As such, the majority of proceeds from this project will be used to provide for Jon's housing and other long-term needs, such as a wheelchair-accessible vehicle.
In addition, a small portion of the proceeds from this first CD will benefit the work of the Family Caregiver Project, (see below). These proceeds will allow us to expand our educational and lobbying efforts promoting policies in Medicaid programs throughout the U.S. that conserves family caregivers as a resource, improves client health outcomes, and reduces the financial risk of vulnerable families.
Of course, a big goal of this music project is to help give increased exposure to the creative talents of emerging musical artists! So, an integral part of the project is that it be an ecclective collection of musical talents. The theme for this first CD is: 'contemporary instrumental' with a variety of instruments such as; piano, cello, violin, flute, etc. Original music from a recent or upcoming album is preferred, and can be either solo, ensemble or 'orcestrated'. So, if you know of a musician(s) that might be interested in participating in the House Blend project, please let me know, or have them contct me at: alan@TeamJon.org
P.S. I'm going to need the help and skills of a lot of folks in order for this project to be as successful as possible. So, if you have experience producing music projects, working in public relations, or just looking for an opportunity to volunteer for an interesting and worthy cause; let me know!
Family Caregiver Project Update
As I've reported in the previous newsletters, Jon and I have been working to abolish the current DSHS rule prohibiting compensation to spousal and parental caregivers. For a fuller description of the issue in a previous newsletter, click here.
Over the last 18 months, we've established an ongoing dialog with DSHS policymakers to discuss this issue and opportunities to change this policy. Over the course of time, these agency officials have exressed a tentative interest in changing the existing rule to allow spouses to be paid to provide in-home care for their loved one.
A few weeks ago I had the opportunity to meet again with this group of officials, and I'm very happy to report that the meeting was a productive one. As a first step in that process, DSHS is interested in developing a pilot program to study the dynamics involved in extending pay to spousal caregivers, most notably the impacts such a policy change would have on the agency's budget and caseload.
Another very positive thing that came out of this meeting is that, for the first time, a representative from DSHS' Children's Administration joined in the discussion to explore further extending this policy change to include the parental caregivers of minor children, (which are similarly currently barred from being paid for the caregiving tasks they perform).
Of course, a great deal of work has to occur before this policy change can be realized. Most notably, a bill authorizing the change in policy and the pilot project has to be passed in the upcoming legislative session in January. One task that I've committed to prior to that time, is to work to identify supportive legislators to draft the Bill and sponsor/cosponsor it in both the Washington State House and Senate. (If anyone happens to have a good relationship with a Washington State legislator, please talk to me!)
A lot of other work needs to be undertaken though to make sure that this Bill passes into law in 2017! Not only do legislators need to hear from their constituents about how important this policy change is for the protection of vulnerable families, but coaltions with civic and religious groups need to be developed, funds raised, news articles written, etc... Anyone wanting to donate some volunteer time to raise awareness about this important issue and move a solution forward, please contact me. This is definitely more than a 'one-person' task, and a wide variety of skills are greatly needed!
Walk to Defeat ALS - Join TeamJon for our second Seattle Walk
On Saturday, September 10th, the ALS Association - Evergreen Chapter will be hosting the 2016 Seattle Walk to Defeat ALS. The 2.5 mile walk will be held at Seattle's Seward Park. Walker check-in begins at 10:00 am, and the walk begins at 11:00 am.
Your participation in the Walk will make a difference in the lives of those affected by ALS. The money we raise will help The ALS Association support global research, assist people with ALS, fund multi-disciplinary certified clinical care centers, and foster government partnerships. Each dollar we contribute will make a difference! The ALS Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.
This will be TeamJon's second year participating in the Seattle Walk. We hope to build on our success from last year and add even more walkers to our team! Won't you join us? The more the merrier! Thank you so much and we look forward to seeing you at the Walk! To visit the Walk to Defeat ALS TeamJon page and join the TeamJon team, click here.
This & That...
With Jon's move into skilled nursing care, I must now turn much of my attention and energy for a bit to closing up our household and finding a new place to call home for myself. Over the next month, I'm going to be sorting through our possessions and paring down what I can for storage. However, I still need to find a new place to hang my hat!
I'm hoping to find a very modestly priced M-I-L or one-badroom unit somewhere in South Snohomish County. (Although my budget is limited, I am very 'handy' and am willing to exchange re-modeling work for partial rent.) Ideally, I'd love to find a rental in the town of Snohomish, in order to be close to Jon; but anywhere within a reasonable distance is fine!
Please help me network this need with your community of family and friends. If you, or someone you know, might have a possible place available around mid-September, please let me know. Any leads are greatly appreciated!
Thank you for reading and sharing this newsletter! The need to share Jon's story and build his community of supporters is as important as ever. Please help us by sharing this Newsletter with your community of family and friends. The link to the online version of this newsletter can be found by clicking on the link below.
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:
Also, please help us spread the word about Jon's crowdfunding campaign by inviting your family and friends to visit the TeamJon GoFundMe page at:
On behalf of both Jon and I, thanks to everyone for your continued love, encouragement and support. We wish everyone a wonderful Summer!