Community of Practice for Supporting Families with Disabilities

Exciting step for caregivers of those with dementia and Medicare. One day, hopefully, this will be the norm for all families supporting loved ones with disabilities.

Medicare explores a new way to support caregivers of dementia patients The government is launching an experimental program to ease the burden on caregivers of people with Alzheimer's. The idea is to keep patients healthier without exhausting their families.

The LifeCourse Nexus Training and Technical Assistance Center at the UMKC Institute for Human Development is hiring a Senior Project Coordinator for Supporting Families. Join the team and discover the joys of building capacity and creating a world where all people have opportunities to explore, problem-solve and plan their good life.

Apply here: https://bit.ly/3Kc8aln

WE ARE HIRING! ⭐

Join our team and discover the joys of building capacity and creating a world where all people have opportunities to explore, problem-solve and plan their “good life.”

We are seeking an experienced and resourceful leader to become a Senior Project Coordinator for Supporting Families with the LifeCourse Nexus. This position will have an integral leadership role in the National Community of Practice on Supporting Families (CoP), which works with more than 20 member states on initiatives leading to systemic change for families and caregivers.

Some duties include:
🟣 Manage and coordinate a portfolio of national and state projects focused on supporting families, caregivers of members who are aging or with a disability.
🟣 Identify and develop new and on-going projects and funding focusing on family and caregiver support with internal IHD staff and external partners.
🟣 Provide technical assistance and training to family-focused organizations and professionals to integrate and implement family support practices, including the LifeCourse framework and tools.

Apply Now 👉 https://bit.ly/3Kc8aln

Join LifeCourse Nexus Director, Sheli Reynolds, on Jun 27, 2024 at 11:00 a.m. CT for Supporting Family Caregivers: The Changing Policy and Practice Landscape presented by Health Management Associates.

Register here: bit.ly/45FLIuU

UPCOMING WEBINAR: Hear Michelle Reynolds, Ph.D., from the University of Missouri-Kansas City’s Institute for Human Development as she joins with other notable speakers in a webinar focusing on:

SUPPORTING FAMILY CAREGIVERS: The Changing Policy and Practice Landscape

June 27, 11 a.m. CT
REGISTER AT: bit.ly/45FLIuU

Hosted by Health Management Associates, the webinar’s speakers also include:

• Greg Link, MA, Director of the Office of Supportive and Caregiver Services, Administration for Community Living

• Barry J. Jacobs, Psy.D., Principal, Health Management Associates

• Sharon Lewis, Principal, Health Management Associates

Speakers will discuss policy and practice advances and the potential impact these may have on enabling more Americans to live at home and in the community.



Administration for Community Living
Community of Practice for Supporting Families with Disabilities
Nasddds

Great time learning and sharing from others from around the nation committed to research, practice and policy for developmental disabilities. Proud to represent the AAIDD Family Interest Network. AAIDD

George Gotto, director of the University of Missouri-Kansas City’s Institute for Human Development, joins with IHD Assistant Director Sheli Reynolds (center) and Senior Research Assistant Meghan LaMarche (right) at the American Association on Intellectual and Developmental Disabilities conference in Louisville, KY, this week.

Reynolds and LaMarche presented a poster session titled, “Facilitating Family Supports and Advocacy.”

AAIDD
Missouri AAIDD

How can you use Charting the LifeCourse to support families?

New Jersey’s Community of Practice for Supporting Families team has led community and system transformation to equip people and families to communicate what they want for their good life and to expect professionals and systems to be responsive to that vision.

At Showcase 2024, they highlighted examples for integrating CtLC within family support organizations, regional family support planning councils, advocacy and leadership training, state agency-led family networking and education sessions, and cross system collaboration.

Check out some of the innovative ideas, like how they recreated the star to identify support options for individuals and families across all life stages and created an advocacy plan around family support in New Jersey.

Thank you to New Jersey Division of Developmental Disabilities, New Jersey Family Support Planning Council New Jersey Council on Disabilities, and The Boggs Center on Developmental Disabilities for sharing these innovative ideas, and empowering and supporting individuals and families in your state.

The National COP Meeting is off to a great start! We couldn't be more excited to have this group together in-person to further the work supporting families movement through enhancing policy practice and culture change!

Nearly all children with intellectual and developmental disabilities getting supports live with a family member. Just under half of adults getting home and community-based services live with a family member. The rest live in a group home, in a host or foster family home, or in their own home. Learn more at https://shorturl.at/astu7.

Learn about the history of supporting families through the lens of Sheli Reynolds experience as a sibling.

THE FAMILY FACTOR: Impact on Disability Outcomes

Welcome back to the third season of Accessible the podcast!

Accessible is the podcast that opens the door to disability leaders and their ideas. Accessible features the Institute for Human Development’s own director, George Gotto, and senior research assistant Amelia Reighard.

Accessible features interviews and insights from leaders in the disability field. By listening you can gain knowledge for your own mind, career and professional development. In turn, share these ideas to help others learn from you.



LISTEN TO THE PODCAST at https://linktr.ee/accessiblepod
READ THE TRANSCRIPT at bit.ly/4cwsxXr


IN THIS EPISODE
In today’s episode, George and Amelia catch up with Sheli Reynolds, associate director here at UMKC’s Institute for Human Development and director of LifeCourse Nexus. Growing up as a sibling of someone with a disability, Sheli brings a personal perspective to her work in advocacy, systems change, and her development of the LifeCourse Tools framework. This was a fascinating conversation about the landscape of supporting families of individuals with disabilities and how the context of the family is vital in providing care in all areas.

ACRONYM GUIDE:

• UCEDD - University Center for Excellence in Developmental Disabilities

• LEND - Leadership Education in Neurodevelopmental Disabilities

• HCBS - Home and Community Based Services


RESOURCES IN THIS EPISODE:
• LifeCourse Nexus: ⁠https://www.lifecoursetools.com/⁠

• LifeCourse Showcase - April 23-25, 2024 - Kansas City, Missouri: ⁠https://www.lifecoursetools.com/events/showcase-2024/⁠

• Missouri Family to Family: ⁠https://mofamilytofamily.org/⁠

• People First of Missouri: ⁠https://www.missouripeoplefirst.org/⁠

• Community of Practice: Supporting Families Throughout the Lifespan - ⁠https://www.nasddds.org/projects/community-of-practice-supporting-families-throughout-the-lifespan/⁠

• To learn more about the Turnbull Family:⁠⁠ https://mn.gov/mnddc/ann-turnbull/ann-turnbull-10.html⁠⁠

Accessible is a partnership between the Missouri Leadership Education in Neurodevelopmental Disabilities – or LEND – and the Missouri University Center for Excellence of Developmental Disabilities. LEND’s purpose is to prepare graduate students for future work in the field of developmental disabilities. We hope you enjoy the conversation.

Since 1977, ICI's Residential Information Systems Project (RISP) has gathered, maintained, and analyzed longitudinal data on Medicaid funded long-term supports and services for people with intellectual and developmental disabilities. Here you can find answers to our most frequently asked questions. https://risp.umn.edu/

A World of Opportunities: Creating Inclusive Communities | ACL Administration for Community Living Secure .gov websites use HTTPSA lock ( ) or https:// means you’ve safely connected to the .gov website. Share sensitive information only on official, secure websites.

👨‍👩‍👧‍👦 Empower your child's journey beyond the classroom! Our resource for this week dives into how families can be pivotal in crafting enriching work-based learning experiences for their students with disabilities.

Discover practical tips for nurturing independence, career skills, and real-world success. Check out the Fast Fact now!

Families’ Role in Work-Based Learning Experiences:
https://centerontransition.org/resources/publications/download.cfm?id=1219
This resource covers:
✔️ families' role in supporting work-based learning
✔️ activities families can do at home, school, and in community settings to support their child’s WBL experiences

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The Center on Transition Innovations (CTI) is affiliated with the VCU Rehabilitation Research and Training Center ().

This article and data supports the importance of the work that you are doing in the CoP in your states.

Caregiving Pressures Mount For Families Of Those With IDD With fewer and fewer services available for individuals with developmental disabilities, a survey of thousands of caregivers across the country finds families increasingly strained.

Great reminder on how to support all members of the family in creating strategies to set their goals.

January is often a time of resolutions, resets, and new goals. This busy mom and caregiver used the integrated support star to identify how she could prioritize health and fitness in the new year. She focused on things that were already in her life, so that she did not have to spend additional money on her wellness journey. She realized that gaming systems and streaming networks that her family already owned had many options for her to work out at home when she is unable to leave.

To learn more about healthy living options and how to use CtLC to plan and organize your goals, join our Good Life Group on Thursday, January 25.

Register 👉 http://tinyurl.com/bdf5pm82

The LifeCourse Nexus is excited to have a breakout track dedicated to supporting families and family-led organizations, focusing on using CtLC to expand possibilities and enhance supports to families. We would love to have some of our CoP states and partners share their experiences and lessons learned - submit your proposals before the deadline on Friday.

Don't forget to submit your 2024 Showcase Proposals by Friday, December 22nd! Learn more and submit your proposals here: https://bit.ly/47wbYrr

The LifeCourse Nexus is excited to prioritize technology-based proposals for spotlight sessions that include an interactive "show and share," as well as full breakout presentations highlighting how you have expanded possibilities such as:
• using technology in your own life
• planning with people to emphasize and ensure access to technology
• developing policies and procedures to support access and use of technology (including funding, training, etc.)

LAST CHANCE: Don't forget to register for Thursday's Supporting Families Best Practice Series webinar Enhancing the Peer Support Workforce for People with I/DD and their Families!

Register TODAY: https://bit.ly/499sBL6

Thank you Alison Nodvin Barkoff for your passionate and persistent leadership and advocacy in bringing attention to the issues of supporting families.

Supporting Family Caregivers: A Key Issue for ACL and for Our Time | ACL Administration for Community Living Secure .gov websites use HTTPSA lock ( ) or https:// means you’ve safely connected to the .gov website. Share sensitive information only on official, secure websites.

In Thursday's Supporting Families Best Practices Series session, we will provide an overview of the Recommendations of the National Agenda for Supporting Families. Don't miss your chance to join Family Voices, Inc. (National), INCLUSION INTERNATIONAL, FACT - Family Advocacy and Community Training, and Open Doors for Multicultural Families as they discuss exploring and expanding the definition of family and working to support the full spectrum of family roles.

Register today before it's too late: https://bit.ly/3KSDF4A

Administration for Community Living
Association of University Centers on Disabilities

Family Voices is excited to announce the publication of “A Patient-Centered Autism Research Agenda to Engage the African American Community.” This agenda was developed by engaging over 200 African American autistic individuals, parents/family caregivers, and auPtCiOsRmI researchers. This project was funded through a Patient-Centered Outcomes Research Institute - PCORI Eugene Washington PCORI Engagement Award (EASC-IDD-00251). Learn more about the outcomes of this project at www.familyvoices.org/ARAProgram/Resources.

Join us for the upcoming Supporting Families Best Practices Series webinar Expanding and Operationalizing Family Support on September 7th! We are excited about this opportunity for you to hear how organizations such as Family Voices, Inc. (National), INCLUSION INTERNATIONAL, FACT - Family Advocacy and Community Training, and Open Doors for Multicultural Families are exploring and expanding the definition of family and working to support the full spectrum of family roles. Register Here: https://bit.ly/3KSDF4A

Administration for Community Living
Association of University Centers on Disabilities

Join us for the first Best Practice Series webinar on Sept. 7th at 1 p.m. CT! Register Here: https://bit.ly/3KSDF4A

In this session, we will provide an overview of the Recommendations of the National Agenda for Supporting Families. Panelists will discuss the diverse needs of families and provide perspectives on the many ways family roles can be defined and supported. We will also explore national policies that support an expanded definition of family in which all members receive the services, supports and assistance they need to pursue their version of a meaningful life.

Nasddds Administration for Community Living Autism Society of America Center for Parent Information and Resources HSRI Families Together, Inc. Family to Family Health and Information Center Family Voices, Inc. (National) National Down Syndrome Society National Association of Councils on Developmental Disabilities USAging The Arc of the United States Self Advocates Becoming Empowered (SABE) Parent to Parent USA The Autistic Self Advocacy Network FACT - Family Advocacy and Community Training Association of University Centers on Disabilities Family Voices of Wisconsin Michigan Developmental Disabilities Institute Maryland Department of Health - Developmental Disabilities Administration UNMC Munroe-Meyer Institute TASH Brill Consulting LLC People First of Alabama Ohio Department of Developmental Disabilities Open Doors for Multicultural Families Partners For Inclusive Communities Imagine Possibility, LLC Premier Educational Services Spectrum of Hope INCLUSION INTERNATIONAL Utah Developmental Disabilities Council National Alliance for Caregiving Oregon Council on Developmental Disabilities

We love this Delaware Division of Developmental Disabilities Services - DDDS!!

The Charting the LifeCourse (CtLC) Framework is a set of principles and tools that help individuals and families plan for their future and articulate their goals. The Division of Developmental Disabilities Services (DDDS) has introduced the CtLC Framework to individuals and families who are eligible for DDDS services. This framework is used as part of the person-centered planning process to support individuals in identifying the information and resources they need to achieve a good life.

DDDS has also introduced the CtLC Framework internally and with Agency Partners for strategic planning purposes. By using this framework, DDDS aims to identify and strengthen resources and services that can better support families.

To further promote the understanding and application of the CtLC
Framework, DDDS has established the BUCKET Club. This club serves as a virtual and interactive learning forum where individuals, families, and professionals from the disability community in Delaware can come together. The club also welcomes participants from the community at large. The main objective of The BUCKET Club is to centralize resources and provide a platform for capacity-building in applying the CtLC Framework.

Each month, The BUCKET Club focuses on a new topic related to the CtLC Framework. The club provides guided conversations and implementation strategies for participants, allowing them to plan, problem-solve, articulate their needs, and identify supports to achieve their goals. A representative from the Division of Developmental Disabilities is involved in each month's activities to offer guidance and support.

Overall, the BUCKET Club and the CtLC Framework aim to empower
individuals and families with disabilities by providing them with the necessary tools, resources, and support to create a meaningful and fulfilling life plan.

𝗪𝗵𝗲𝗻: Designated Wednesdays at Noon, and Saturday at 9:00am
𝑾𝒆𝒅𝒏𝒆𝒔𝒅𝒂𝒚, 𝑨𝒖𝒈𝒖𝒔𝒕 16𝒕𝒉, Noon-12:45 &
𝑺𝒂𝒕𝒖𝒓𝒅𝒂𝒚, 𝑨𝒖𝒈𝒖𝒔𝒕 26𝒕𝒉, 9:00am-9:45am
𝗝𝗼𝗶𝗻 𝗭𝗼𝗼𝗺 𝗠𝗲𝗲𝘁𝗶𝗻𝗴:
https://ddds.zoom.us/j/84241470391?pwd=U1BIOC84WGtCUDQ5U3Vmb0VPVE1idz09
Meeting ID: 842 4147 0391
Passcode: 609542
𝗔𝘂𝗱𝗶𝗲𝗻𝗰𝗲: Open to any individual, family caregiver, or professional

On April 27, come and learn more about our new Friend of P2P, The Sibling Support Project, and how your organization can start its own SibShop program!

Register now: https://us02web.zoom.us/meeting/register/tZcrd-uurD0vHdy-MkSVUYC3HBRZnHMlBimd #/

If you haven’t booked your room for the Annual Merring and CtLC Showcase… today’s the day! Don’t miss the special discount (almost $100 off) and the opportunity to celebrate and learn together!

Book Your Group/Corporate Rate | Marriott International

So many great sessions on supporting people in the context of their family. Don’t miss the chance to hear how states are infusing supports to families across all domains and service systems! There’s still time to register!

7th Annual CtLC Showcase 2023 Celebrate the Movement! Join us May 2-4, 2023 for the 7th Annual Charting the LifeCourse Showcase in Kansas City, MO. Contribute to the energy from fellow advocates, family leaders, professionals and other stakeholders who have joined us on the journey of learning, sharing and networking arou...

The CoP has an important role in supporting the implementation of this rule.

Today is National Caregivers Day! ⭐ To celebrate the caregivers in your life, join us in fighting for a better future for all caregivers and those they care for. Sign the petition: https://go.caringacross.org/a/careforall