Mixed Media on Canvas by Carol J. Hay

There is a great wealth of information available "out there" that many are not aware exists.

NEW ON Our Mother’s Voice LINKS

We have not tried to be exhaustive in discussing these topics, or including all the issues that will arise when families face the life changes of placing a loved one in a nursing home. And for many families, providing care at home is the best option – a decision which also brings challenges. These links to the resources of others will help to further equip families to become strong advocates not only for their own family members but also for systems change in the field of long-term care, whether that care takes place in a nursing facility or with assistance in the home.


We encourage you to explore these resources; and if you find others that we haven’t included, please let us know at contact@ourmothersvoice.org so that we can add them to our compendium.

Quick Links

Spiral Galaxy

The Founder and President of Our Mother’s Voice discusses the history and goals of the organization on the radio!

For the audio podcast:

http://leojansen.net/WLMAMedia/Podcast/Kathy%20Bradley%2001-06-15.mp3

For a video version of the interview:

https://www.youtube.com/watch?v=DeTABWD798c&feature=youtu.be


​Newly-published 2019 Alzheimer’s Disease Facts and Figures infographic:
https://www.alz.org/media/Documents/alzheimers-facts-and-figures-infographic-2019.pdf
Full report:
https://www.alz.org/media/Documents/alzheimers-facts-and-figures-2019-r.pdf

For a guide book containing best practices for preventing harm to residents in nursing homes from a variety of causes:
https://qioprogram.org/sites/default/files/editors/141/C2_Change_Package_20181107_FNL_508.pdf

 The Consumer Voice has several resources that include important information about abuse prevention, abuse reporting, and protection of individual rights:

https://theconsumervoice.org/issues/other-issues-and-resources/elder-abuse
And this guide defining abuse, neglect, and misappropriation of property:
https://theconsumervoice.org/uploads/files/long-term-care-recipient/abuse-fact-sheet-18.pdf

Center for Medicare Advocacy has crafted resources advocates can use to educate providers, contractors, and adjudicators who are not versed in the federal court decision Jimmo v Sebelius, which made the so-called “improvement standard” invalid in determining the appropriateness of physical, occupational, speech, and other special therapies:
https://www.medicareadvocacy.org/wp-content/uploads/2018/12/Jimmo-Fact-Sheet-for-Providers-Contractors-Adjudicators.pdf

 Kaiser Health News has published a report detailing the harm caused by absence of consistent, strong regulations governing assisted living for people with dementia:
https://khn.org/news/assisted-livings-breakneck-growth-leaves-patient-safety-behind/

To learn how the states are addressing palliative care, this page links to the full report from the National Academy for State Health Policy, and to state-by-state information:
https://www.johnahartford.org/events/view/report-advancing-palliative-care-for-adults-with-serious-illness-a-national/

 The Center for Medicare and Medicaid Services has released a “Change Package” resource of best practices to prevent harm from all causes in nursing homes.  The project explanation and content of the resource are described here:
https://qioprogram.org/all-cause-harm-prevention-nursing-homes
and the resource can be downloaded here:
https://qioprogram.org/sites/default/files/editors/141/C2_Change_Package_20181226_FNL_508.pdf

This New York Times article from January 2018 illustrates a growing trend in a get-rich scheme in which owners of nursing homes also have ownership interest in numerous support services companies (therapy, meal service, etc.) with whom they contract – and overpay – for these support services, thereby reaping large profits while underfunding the nursing homes.
https://www.nytimes.com/2018/01/02/business/nursing-homes-care-corporate.html?_r=0

The Center for Medicare Advocacy explains that home health aide services are often misrepresented and under-provided by home health agencies:
https://www.medicareadvocacy.org/home-health-aide-coverage-continues-to-shrink-attention-must-be-paid/
and offers a case study as an example of how to advocate for needed home health aide services:
https://www.medicareadvocacy.org/case-spotlight-a-medicare-beneficiary-in-need-of-home-health-aides/