Grief Support Toolkit for People with Developmental Disabilities

CDD is seeking proposals to fund one grantee up to $200,000 per year for two years ($400,000 total, subject to availability of funding) to develop and implement a toolkit that supports people with developmental disabilities through transitions and grief. Background According to the Association on Aging with Developmental Disabilities (AADD), the average life expectancy for people with developmental disabilities has shifted from 22 years in 1931 to 70 years as of present. This is due to better care and awareness. As a result, many people with DD are experiencing life transitions that were previously less common. These transitions include loss of parents, caregivers, peers, and familiar living environments (Bigby, 2004). While it is positive that people with DD are having more life experiences, this also introduces increased social and emotional challenges, including experiencing grief and loss. Despite this, emotional support systems specifically designed to support people with DD are limited. Family members, caregivers, and even service system staff may not know how to recognize and respond to grief appropriately. This can result in frustration on both ends, as well as decline in mental health (Blackman, 2003). Grief is commonly understood as the emotional response to the death of a loved one. However, grief is a broader psychological and emotional reaction to significant loss or major life changes (Doka, 2002). These losses may include the death of loved ones, but they can also involve transitions such as relocation, loss of important relationships or pets, changes in daily routines, the loss of independence, among others. For people with DD, these forms of loss may occur often. This is due to changes in caregiving arrangements, residential placements, or support services. Even though it’s very common, the grief of people with DD is often overlooked or misunderstood. Families, caregivers and other supporters may not know how to recognize and respond to grief in ways that meet the individual’s needs or allow the individual to process their feelings. Due to limited emotional support systems specifically designed for people with DD, there is a need for accessible, practical resources that recognize and support the different ways people with DD may experience and express grief. Approach The CDD will fund a prospective grantee to develop, pilot, implement, and evaluate a comprehensive grief support toolkit specifically for people with DD, caregivers, and the people who support them. The successful applicant will also be required to use a person-centered and accessible approach to develop resources that help people with DD to recognize, understand, communicate and process grief and other experiences of loss and transition. The prospective applicant should include a plan to ensure the toolkit and training are culturally competent and resonate across cultures represented in New York State. The grantee should recognize that grief may look or feel different to people and should therefore include resources that can be individualized and adapted to different support needs. The accessible, culturally competent toolkit should include practical resources that may include but are not limited to; Visual Communication tools. Guided conversation prompts. Storytelling and memory building activities. Structured exercises to help individuals express grief-related emotions. Resources to help people with DD recognize and communicate their own grief. Practical strategies for families, caregivers and other supporters to recognize and respond to grief. The project should include a training component to help people with DD; their families and caregivers understand and effectively use the toolkit. The training should help participants recognize that grief may be expressed differently and help them know how to identify potential signs, behaviors and changes that may indicate an individual is experiencing grief. The training should also provide practical guidance on how to respond when grief is identified, including how to initiate support conversations and how to create opportunities for emotional expression while respecting the individual’s communication and support needs to avoid dismissing or misinterpreting grief related responses. The grantee should also develop a plan for dissemination and broad access so that people with DD and their supporters are aware of the resource and can use it even after the grant period. The successful applicant will identify a dissemination plan that includes both people with DD already engaged with as well as those outside the service delivery system. The grantee will be required to evaluate the project using both qualitative and quantitative data to measure the effectiveness of the project. Evaluation findings should be used throughout the project to assess the usability and usefulness of the toolkit and training and indicate how the data will be used to make necessary improvements. The successful applicant will define an evaluation plan that, among other metrics, measures the reach and usage of the toolkit. Expected Key Deliverables The successful grantee will be expected to: Develop a comprehensive, accessible, and culturally relevant grief support toolkit. Develop and implement a training program on how to best utilize the toolkit. Develop and implement a dissemination and access plan. Develop and implement an evaluation plan and report on project reach and impact. Desired Project Outcomes The intended outcomes of this grant opportunity include: Increased knowledge of grief and grief responses among people with DD, their caregivers, and other support systems. Increased confidence among people with DD in recognizing and processing their own grief. Increased caregiver and family confidence in identifying and responding to grief among people with DD. Reduced stigma and misunderstanding around grief among people with DD. Increased inclusion of people with DD in conversations and decisions related to loss and life transitions. Improved access to grief support resources and training. Improved emotional well-being and healing in people with DD. Business enterprises awarded an identical or substantially similar procurement contract within the past five years: None