Home Dialysis Central has published a blog post on the “invisible” disabilities that often afflict ESRD patients. The Medical Education Institute has commissioned a self-adhering window sticker for your car that says “Invisible Disability,” with the idea that you can just point to the sticker rather than trying to explain yourself whenever you are questioned about parking. Ordering instructions are included in the article. We didn’t read the post in time to announce it before or during, but this past week was 2019 Invisible Disabilities Week. Find out more from the Invisible Disabilities Association at https://invisibledisabilities.org/seminarsandevents/invisible-disabilities-week/attachment/2019-invisible-disabilities-week-is-here-oct-13th-19th/.
Kidney Care Partners (https://www.pr.com/press-release/744275) has summarized the ESRD-related provisions of the new budget law, H.R.1892 – Bipartisan Budget Act of 2018; the Act “will expand the use of home dialysis therapy through use of telehealth services; expedite patient access to quality dialysis care at newly certified facilities; and extend authority for Special Needs Plans (C-SNPs) without interruption in care.” In addition, payments for non-emergency ambulance use are reduced.
While the legislation as passed and signed may not be effective until HHS converts it to administrative law, the original lawyerese can be found at:
- For home health telehealth, https://www.congress.gov/bill/115th-congress/house-bill/1892/text#toc-HD17800AE048F430AB1B9EEFBB03FDD55.
- For newly certified units: “an initial survey of a … renal dialysis facility … shall be initiated not later than 90 days after such date on which both the provider enrollment form … [is] complete and the provider’s enrollment status indicates approval is pending the results of such survey,” https://www.congress.gov/bill/115th-congress/house-bill/1892/text#toc-H63740900ED184AAFA50F73B6BE696312.
- For continued access to Medicare Advantage special needs plans for vulnerable populations, https://www.congress.gov/bill/115th-congress/house-bill/1892/text#toc-H89926B550ADD45858E6C1A410176952E.
- For reduction of non-emergency ESRD ambulance transport payments, https://www.congress.gov/bill/115th-congress/house-bill/1892/text#toc-HC2CE8E0B05404D7CAB3E35F887FDC255.
If you or your patients are traveling a long way for in-center dialysis or home dialysis supplies, consider one of the many new facilities that have opened recently in the Network. The nineteen new dialysis facilities opened since December 2012 are listed below. Facilities that offer home dialysis (PD = Home Peritoneal Dialysis, HHD = Home Hemodialysis, HFD = Home Frequent Dialysis) are indicated…
- Denali (North Anchorage)
- Magic Valley (Twin Falls) – PD
- Maywood Park (Portland Airport)
- Milton-Freewater – PD
- Florence – PD
- The Dalles
- Downtown Grants Pass
- Northeast Salem
- Noble Woods (Hillsboro)
- Scholls Ferry (Tigard)
- Hilltop (Oregon City)
- Portland Gateway (Rocky Butte)
- Enumclaw – PD, HHD
- East Tacoma
- Tacoma Mall – PD, HHD, HFD
- West Kennewick
- Anacortes – PD, HHD, HFD
Ride Connection is a nonprofit transportation provider in the Portland area. They are researching transportation challenges for dialysis patients, guided by an advisory committee of patients, caregivers, and transportation providers. The research will help Ride Connection understand the key issues around transportation for dialysis patients and help determine changes in their policies, with the goal of increasing patient comfort while maximizing efficiency and resources.
They are looking for dialysis patients to complete a brief survey about transportation needs and challenges. The questions cover patients’ experience with transportation and also their experience with dialysis treatment, including complications related to transportation. They are also looking for caregivers to complete a similar survey about the transportation needs and challenges they have seen patients facing, in addition to their own experience with transportation.
The patient survey, at https://www.surveymonkey.com/s/YHF9NPZ, takes approximately 5 minutes to complete. The caregiver survey, at https://www.surveymonkey.com/s/dialysiscaregiver, also takes approximately 5 minutes to complete. Find out more about the project and about Ride Connection at http://www.rideconnection.org/Ride/AboutUs.aspx.
Ride Connection is a Portland non-profit organization that works with community partners to coordinate transportation options for older adults and people with disabilities in Clackamas, Multnomah, and Washington counties with customer-focused, safe, reliable transportation options. They are organizing a research project to brainstorm and pilot-test innovative approaches to the unique characteristics of transportation to and from dialysis. Patients, family, and caregivers are invited to participate in the project in any of several capacities – an advisory board, a focus group, a workshop, a survey, and/or just receiving progress reports. If you don’t live in the Portland region, you can still sign up to receive progress reports, for ideas about possible future improvements in your own area. For details see http://www.rideconnection.org/ride/AboutUs/DialysisResearch.aspx.