Adira grantees set to advance issues named by COVID-19 response grantees: Caregiver mental health, care coordination, resource sharing among disease communities

Adira granteesRICHMOND, VIRGINIA — Adira Foundation awarded $360,000 to five projects across the country that will actively address some of the most pervasive needs seen collectively by people impacted by one or more of the neurodegenerative diseases Adira currently targets: ALS (amyotrophic lateral sclerosis), Alzheimer’s disease and related dementias, Huntington’s disease, multiple sclerosis and Parkinson’s disease.

The five nonprofits—Bangor (Maine) Region YMCA, Compassionate Care ALS, Chronic Care Collaborative, Family Caregiver Alliance and I AM ALS—are grantees of Adira’s second round of competitive funding, its Fall 2020 Pervasive Needs Grants.

The program set out to award $250,000 around three cross-cutting, under-addressed priorities. Listening sessions with people most impacted by these five diseases identified top needs and then grantees of Adira’s first round of grants, an emergency response in April to COVID-19 prioritized them to:

  1. Improving caregiver mental health
  2. Easing the coordination of care
  3. Sharing resources within communities.

Founder and CEO Greg Smiley said they convened all 12 grantees and asked: Which needs are urgent yet seem relatively untouched? He said: “Simply put, some issues are so deep, entrenched, or expensive that they may be too big for anyone to own.”

Seeing the urgency of need and quality of submissions they allocated more, $360,000.

“It only made sense to allocate more money to supplement the good work nonprofits already provide for those most impacted by these five diseases,” he said. “The projects are set up to make progress on the issues like caregiving and finding your way through the health care system—issues COVID-19 has clearly exacerbated for our whole nation, but especially for people with highly complex diseases.”

Projects for these Adira grantees will run through Dec. 31.

The five projects

Bangor Region YMCA

This project pulls together extensive existing programming for people with Alzheimer’s and Parkinson’s in Central and Eastern Maine—arts, exercise, a speaker series, nutrition, etc.—into one, holistic care coordination program specific to neurodegenerative diseases. The service will provide free transportation and recruit more participants from the surrounding region. The program will serve as a model for other Ys throughout the region to replicate.

Focus areas: Caregiver mental health, care coordination, community resource sharing.

Compassionate Care ALS

Compassionate Care ALS will offer an opportunity for current and former ALS families across the country to volunteer as caregivers for other families through a structured, community-building training program. It consists of yearlong curriculum, including a two-day intensive workshop discussing end-of-life work, language, listening, grieving and trauma.

Focus areas: Caregiver mental health, community resource sharing.

Chronic Care Collaborative

This project will establish a statewide care coordination and assistance network for people with ALS, Alzheimer’s and related dementias, Huntington’s, MS, Parkinson’s and caregivers in Colorado. The program’s design is focused on cost savings by maximizing extensive community resources and health care benefits. People can access the program through provider referrals, a consumer helpline, and a coordinated referral program across Colorado nonprofits serving the neurodegenerative community.

Focus areas: Caregiver mental health, care coordination, community resource sharing.

Family Caregiver Alliance

This project will pilot an education and direct support program for caregivers of people with ALS, Alzheimer’s and related dementias, Huntington’s, MS and Parkinson’s starting in the San Francisco Bay area. It will develop and deliver a class curriculum on caregiver mental health that reflects what ND caregivers express as needs in three listening sessions FCA will host in coordination with local ND groups. Curriculum will be made available for local ND organizations to use.

Focus areas: Caregiver mental health, care coordination, community resource sharing.

I AM ALS

This grant will scale the national I AM ALS Navigation program and the Peer Support Initiative to connect patients, caregivers and loved ones, and also build the Caregivers Platform, an online tool to find affordable home healthcare workers with ALS experience. The I AM ALS Navigation expansion will address referral gaps, and ease the burden for ALS families seeking support.

Focus areas: Caregiver mental health, care coordination, community resource sharing.