It's been a busy couple months for Jon and I since the last TeamJon newsletter, and I apologize for the delay between issues.
The big news this month is that Jon is bidding farewell to his 40's. Today Jon turns 50! The Birthday photos featured in this issue of the TeamJon Newsletter are from an impromptu celebration for him at a Game Night with many of our friends earlier this month. Thanks to all of our dear friends who helped make his birthday celebration so happy and memorable!
Lack of Spousal Caregiver Pay: A Serious Financial Challenge
I want to share Jon's community of supporters a serious challenge that Jon (and I as his spouse) are facing.
In late 2014, Jon applied for In-Home Care Benefits through Washington State's Department of Social & Health Services (DSHS). We undertook this action because the level, variety and intensity of supportive care that Jon requires is so high that it makes it impossible for me to have any other employment. On any given week, we may spend 2-4 days at medical appointments. Our hope was that these benefits would provide some minimal compensation to me for the support services that I provide. This pay would augment Jon's Social Security Disability income and allow us to pay our household expenses.
We have since learned that Washington State does not currently allow payment to spouses for the care that they provide, even when that care is such that they cannot hold any outside employment. In our situation, this means that the only income we have is Jon's Disability income. This is sufficient to pay our rent, but leaves less than $100 p/month for all of our other expenses such as: utilities, food, transportation, non-covered medical expenses, etc...
Absurdly, DSHS is happy to pay an "ex-spouse" for their care service. And so many families are compelled to the appalling course of divorce in order to receive the essential benefits they require in order to provide the needed care for a disabled spouse and avoid destitution and homelessness. This option has actually been informally suggested by DSHS personnel to me as well as the option of "turning over Jon's care to a facility, (cryptic-speak for institutionalizing him...), so I could get a job".
We are certainly not the only family to experience this outrageous situation. The incomprehensible fact of this issue is that it is entirely unnecessary! Federal laws were updated over a decade ago to permit states to pay family caregivers, including spouses. This decision is now left virtually entirely up to the states. To date, only California and Oregon have instituted programs to offer this vital benefit. What every married couple outside of these two states needs to be aware of is that everyone is in jeopardy because of these poor policies, and that they are only one bad accident or serious illness away from facing this same situation.
A Potential Bright Spot
The potentially good news, at least in Washington State, is that there may be some administrative interest in changing this policy. As time permits, I have begun speaking with state legislators about this issue. So far, they have all been surprised and aghast that the state does not currently offer this benefit. I have also begun a discussion with DSHS officials and have, (as I was writing this newsletter), been able to schedule a meeting with several DSHS officials including the Assistant Secretary for Aging & Long-Term Support and the Director of Home & Community Services in two weeks.
A Call To Action!
Please keep your fingers crossed for a good outcome. I will report back what I learn from the meeting. In the meantime, please share this newsletter and our story with your community of family and friends. It's very important to raise awareness of this issue, not only in Washington State, but also throughout the U.S. I am also very interested in hearing from other couples that have faced, or are facing, this situation. I am in the process of setting up a website for this issue and will soon have a dedicated email for it. In the meantime, please send emails to: Alan@TeamJon.org
In Other News...
Several months ago, we made the decision to relocate Jon's medical care away from the UW system to Evergreen Health Medical Center. We felt that this would be a better 'fit' for Jon in that the services provided by Evergreen is similarly comprehensive and integrated and is far more responsive. Evergreen is also more convenient for us and allows us to avoid Seattle's congested traffic and parking, (which is no small consideration when you have the number of appointments that Jon has). So far, we have both been very pleased with the quality of care, and we are very happy that we decided to make the switch.
We are also still trying to get a handle on Jon's painful abdominal condition, and both a new GI doctor and a surgeon have evaluated him for treatment. Over the last several months, Jon has undergone a battery of additional tests and scans to determine if there is an identifiable physical problem that can be treated. All of these have come back negative, which suggests that Jon's problem is 'neurogenic'. Meaning that his chronic abdominal pain is likely the result of the continued degeneration of his nervous system.
On behalf of Jon and myself, our heartfelt thanks to everyone for your on-going love, encouragement and support. Your continued generosity has greatly lightened the financial burden that Jon and I face while addressing his declining health and bureaucratic obstacles. I wish to stress that, as important as the contributions, is the need to share Jon's story and build his community of supporters. Please help us by sharing this Newsletter with your community of contacts. The link to this Newsletter can be found by clicking for the online version at:
If you are on Facebook, please encourage your friends and followers to visit and "Like" and "Share" the TeamJon Facebook page at:
Also, please help us spread the word about Jon's crowd funding campaign by inviting your family and friends to visit the TeamJon GoFundMe page at: