New U.S. Agency to Increase Access to Community Supports for Elderly, Persons with Disabilities

Secretary Kathleen Sebelius recently announced a new organization within the U.S. Department of Health and Human Services (DHHS), the Administration for Community Living (ACL). The ACL will combine the efforts and achievements of the Administration on Aging (AoA), the Office on Disability and the Administration on Developmental Disabilities into a single agency with the goal of increasing access to community supports and full participation, while focusing attention and resources on the unique needs of older Americans and people with disabilities.

Historically, the AoA has been the federal entity that oversees Older Americans Act services such as in-home meals, congregate meals, family caregiver support programs, the senior companion program and much more. This merger will bring the aging and the disability communities closer together and lead to more effective advocacy as the two communities share many common concerns about access to services, quality of healthcare, and the strength of home and community-based supports for those living with disabilities. For more information, visit the Administration on Community Living.

June 24-26

The International Conference on Aging, Mobility and Quality of Life (AMQoL) will be held at the University of Michigan in Ann Arbor, MI, June 24-26.

The 2012 conference will focus on the particular requirements of elderly people for transport/mobility that gives them access to the various activities and services that maintain their health and well-being and enhance their quality of life. For more information and to register, visit the conference website.

July 1 (Deadline)

The National Center for Creative Aging is now accepting applications for the Gene D. Cohen Research Award, intended for individuals who have produced research demonstrating the benefits of creativity in the arts.

This award is designed to recognize and honor the seminal work of Dr. Gene Cohen, whose research has shifted the conceptual focus of the field of creativity and aging from a problem paradigm to one of promise and potential." For more information and to apply, the CreativeAging website.

The Gerontological Society of America (GSA), New America Media and MetLife Foundation are sponsoring a program for journalists who cover issues in aging and/or who work for ethnic media outlets serving communities in the U.S.

GSA's website has a listing of articles to date, some of which focus on cultural diversity issues in family caregiving. The deadline for 2012 applications is July 1. For more information and to apply, visit www.geron.org.

July 2

The American Society on Aging is accepting proposals to present at their 2013 Aging in America Conference in Chicago, IL, March 12-16, 2013.

Aging in America is the largest multidisciplinary aging conference in the country. If you have expertise, best practices or cutting-edge research that you'd like to share with more than 3,000 professionals in the field of aging, proposals to present will be accepted throughout the month of June at and end on July 2, 2012.

July 7-11

The National Association of Area Agencies on Aging/n4a's 37th Annual Conference and Trade Show will be held in Denver, Colorado, July 7-11.

Topics will include AAAs and their roles in managed care; care transition grants; opportunities in the Affordable Care Act; and livable communities. Join the National Alliance for Caregiving on July 10 for the Sixth National Conference for Caregiving Coalitions. This one-day event will be held in conjunction with the Annual Conference of n4a. For more information and to register for the conference, visit the N4A website.

July 12

The National Institute on Aging and the Administration on Aging, in partnership with several grantees, are hosting a webinar with the goal of improving coordination of resources available for people with Alzheimer's disease as well as their family caregivers.

"Connecting the Aging Network, Individuals with Dementia, and Caregivers with Research Opportunities" is scheduled for July 12, 10:30 am-12:00 pm (Pacific Time). For more information, visit the AOA website pressroom.

New Resources for Family Caregivers

Visitors to the site will find information and tools to identify local resources that can help with the challenges of daily living, emotional needs, and financial issues related to dementia. There are also links to video interviews with family caregivers, research papers and other fact sheets from the National Institute on Aging (NIA) and other organizations.

Home Instead Care is helping to educate families that are caring for those with Alzheimer's disease or related dementias through a free, interactive educational course, "Alzheimer's CARE". There are five 15-minute modules on topics such as "Understanding Alzheimer's and Dementia," "Managing Behaviors," and "Safety." Try out a module here.

Written by Diana Denholm, a psychotherapist, The Caregiving Wife's Handbook (Alameda, CA: Hunter House, 2012) discusses the often brutal realities of caregiving. It includes interviews with caregiver wives and offers a practical, step-by-step method for caregivers to follow in caring for a spouse. For more information visit www.caregivingwife.com.

"No Thanks, We're Fine: Supporting Families Living With Dementia" is a video which features caregivers of individuals with dementia appealing to their fellow caregivers to seek information, obtain home care and other types of in-house assistance, join support groups, and access respite through day programs and overnight guest houses. View the video here. Free DVD copies may also be requested from the Alzheimer's Society of Ottawa and Renfrew County by e-mail to: [email protected].

Family caregivers of people with frontotemporal disorders often face a host of challenges, from day-to-day medical care to handling changing relationships. Visit "Information for Patients, Families and Caregivers in its entirety online, or to order a free print copy of the booklet, visit the Alzheimer's Disease Education and Referral Center and click on Publications.

SP NCOA Takes Chair of Leadership Council of Aging Organizations: Group Represents Over 60 Million Older Adults

It provides "a voice for seniors and their families in the ongoing national debate on aging policy ... and leadership and vision as America meets the challenges and opportunities presented by its aging society." Under NCOA's leadership, LCAO priorities will focus on the important federal budget challenges facing the nation and America's growing senior population, including programs such as Medicare, Medicaid, Social Security, and non-defense discretionary programs like the Older Americans Act. For more information visit the NCOA website.

Getting to Know the Lifespan Respite Grantees and Stakeholders

. . . expand and strengthen NYSCRC to build a caregiver support services network and to develop a statewide coordinated system, increasing access to respite services for families across age and disability spectrums, including access to emergency respite services.

The project objectives are to 1) develop a coordinated system of accessible, community-based respite services for people of all ages, across all needs; 2) conduct a statewide inventory or respite services and include the information in the statewide NY Connects database; 3) identify and facilitate the development of respite services for underserved populations; 4) identify current programs that train informal caregivers and provide a methodology to link caregivers to programs; 5) determine good recruitment and training practices and establish linkages to recruitment and training of volunteers; 6) raise public awareness about caregiving and the value of respite; and 7) develop a strategic approach to ensure sustainability of respite care delivery and management.

Main activities: The Lifespan Respite Program Core Team formed a THINK GROUP as a preliminary step to creating an Advisory Council. Over 130 groups and individuals became members, representing different regions of the state and different caregiving interests. Members of the New York State Family Caregiver Council as well as ex officio Council members from the Department of Health, Office of Mental Health, Developmental Disabilities Planning Council, Office of Children and Family Services, Office for People with Developmental Disabilities, Office of Temporary and Disability Assistance, Office of Alcoholism and Substance Abuse Services, Commission on Quality of Care and Advocacy for Persons with Disabilities, State Education Department - Vocational and Educational Services for Individuals with Disabilities, and the Council on Children and Families supported the Think Group efforts. State agency participants helped to populate a matrix of respite services in the various systems in New York State, which is a major component of the inventory process. Two student interns completed research to find additional resources to add to New York's inventory of respite services (faith-based respite; respite for caregivers of veterans; and Medicare Hospice Respite).

At the National Respite Conference, in Arizona in October 2011, NY Grantees presented a workshop on the process New York State engaged in, along with the THINK GROUP, to learn about how major systems define respite and how people access respite through those systems (for conference presentation, click here). In November 2011, NYSCRC held its Inaugural Statewide Caregiving and Respite Conference, drawing nearly 120 participants. The NYSCRC has produced and disseminated newsletters and has been developing the NYSCRC website. The Core Team is researching the use of social media to reach out to caregivers, professionals and the general public.

State Respite Coalition Role: The NYSCRC Director is a member of the Lifespan Respite Program Core Team and travels to different regions of the state to provide information about the NYSCRC and the work of the Lifespan Respite Project, to invite participant membership into the NYSCRC, and to learn what local and regional coalitions are doing. The Coalition has expanded to nearly 500 members to help build the caregiver support services network and increase access to respite services for New York families statewide.

New York's Aging and Disability Resource Center Role: NY Connects, (New York State's Aging and Disability Resource Center) is active in providing information on respite services for all age and disability groups. Seventeen percent of the contacts to NY Connects are from caregivers or family members, and "consumer and caregiver supports" ranks third in the category of information and assistance requested. NY Connects is developing a robust long term care services database. As a member of the Lifespan Respite Program Core Team, they will work with the Team to include linkages to local respite services and supports. Information gleaned from the statewide inventory and matrix of respite in the different systems will be added to the NY Connects database, which is expected to go 'live' in the coming months.

Jennifer Rosenbaum, Project Director
New York State Office for the Aging
2 Empire State Plaza
Albany, NY 12223
518-474-2473

Karen Lovino, Lifespan Respite Team Coordinator
New York State Office for the Aging
2 Empire State Plaza
Albany, NY 12223
518-474-0099

Maureen Murphy, Director
New York State Caregiving and Respite Coalition
Lifespan of Greater Rochester
Rochester, NY 14618
585-244-8400, ext. 213
585-244-9114 FAX

State Lifespan Respite News You Can Use

Alabama:

• New State Law: The Alabama Lifespan Respite Resource Network Act 2012-410, passed the Alabama Legislature and was signed into law by the Governor on May 15, 2012. The new law names Alabama Lifespan Respite Resource Network - (Alabama Respite) as the state's lead entity to address issues related to respite. The law also establishes the State Lifespan Respite Coalition in statute as a state entity with members appointed by the Governor. Membership must be culturally, economically and geographically diverse and representative of state demographics. The coalition's responsibilities are to: (1) build partnerships and coordinate respite care efforts statewide (2) provide public awareness about respite to the citizens of Alabama, and, (3) identify, coordinate, and develop, community/funding resources for respite services. View a list of current coalition members here. For more information, please contact Linda Lamberth with Alabama Respite.
• Leveraging Private Funding: Alabama Respite's Sharing the Care (STC) initiative, presented at the 2011 National Respite Conference in Phoenix, Arizona, continues to expand into additional communities throughout the state. A grant from the Walker Area Community Foundation has allowed staff to begin a STC in Walker County, joining other locations in Jefferson/Shelby, Mobile/Baldwin, Houston, Dallas, and Montgomery/Elmore/Autauga Counties. The STC initiatives provide an opportunity for volunteer community stakeholders to develop increased awareness of respite and develop new respite options for caregivers.
• Caregiver and Provider Survey Results: The Alabama Department of Senior Services in collaboration with Alabama Respite contracted with the University of Alabama at Birmingham (UAB) to conduct a survey of caregiver and respite service providers. The final results of this survey may be accessed at www.alabamarespite.org, or contact Linda Lamberth.

Colorado:

• Service Expansion: The Colorado Lifespan Respite Program, known as the Colorado Respite Care Project, will award small grants to organizations across the state to support families in need of respite care. The average award is expected to be $500 which can be used to assist one or more families. Currently, only nonprofit organizations/agencies providing direct care for planned or emergency respite care services in Colorado are eligible to apply. Preference will be given to organizations that are currently serving populations most in need (e.g. families in crisis, individuals on Medicaid waiting lists or who are experiencing extreme financial hardship, minority populations, rural populations etc). In the future, should more funds become available, the Colorado Respite Care Project committee plans to expand grant opportunities available to include: nonprofit organizations who are contracting with respite providers to serve their constituents, for-profit respite providers and other organizations who may be working closely with families to find and/or fund respite care. Successful organizations will be expected to register as providers on the Colorado Respite Coalition (CRC) website provider registry at www.coloradorespitecoalition.org and to evaluate how families are benefiting from the financial assistance program. For more information, please contact Colorado Respite Coalition Co-Facilitators Janis De Baca or Val Saiz. Questions regarding the financial assistance opportunity should to be directed towards Ayesha Sharma, the grant project manager.

Lifespan Respite State Tools: Spotlight on Respite Provider Training

Alabama:
The Alabama Department of Senior Services in collaboration with Alabama Respite has contracted with the University of Alabama at Birmingham (UAB) to conduct a survey of respite provider training needs. From the results of this survey, training needs for respite service providers in Alabama will be determined and a plan for implementing effective training for these providers will be established. Respite providers completing the survey are either paid or volunteer and offer a temporary break for family caregivers of individuals with disabilities or chronic illnesses. To review the survey instrument, please visit the Alabama Lifespan Respite Network website, or contact Linda Lamberth.

Wisconsin:
Easter Seals Wisconsin and Respite Care Association of Wisconsin are creating a statewide "Caring Network" of highly trained respite care providers who will have the required skills to provide in-home respite care for individuals with a variety of disabilities, including highly challenging behaviors, and basic medical and personal care needs. The ultimate goal of the training is to address the shortage of qualified in-home respite care providers in Wisconsin and expand an online referral source for families and caregivers to access these trained providers in their communities. To accomplish this goal, they have developed a comprehensive online course designed for people providing care to individuals of varying disabilities and ages. The course covers: Disability Basics, Lifts & Transfers, Personal Care/ Daily Living Skills, Medication Administration, Communication Techniques, Abuse and Neglect, Caring for Challenging Behaviors, Free Time Activities, and Making Connections (meeting/ training with the family). This will allow participants to work at their own pace, with the ability to start and stop the modules as they go. The online training course will make use of videos, worksheets and quizzes to test the knowledge of participants. Upon successful completion of the online course, the participants will receive a certificate and be offered the opportunity to be added to our respite care provider registry. For more information, please contact Jim Schroeder with the Respite Care Association of Wisconsin at or Val Croissant with Easter Seals Wisconsin.

If you are searching for possible additional funding sources to support respite provider training and other information to build direct service worker capacity in your state, please check the resources available at the National Direct Service Workforce Resource Center.

For additional Lifespan Respite tools and news, check out the other topics on  Lifespan Respite Tools page. Many of the grantees and coalitions have generously shared tools and products that they have developed to date as part of their Lifespan Respite projects. ARCH has posted them on the Tools Page where you can see state examples of respite registries, caregiver surveys, service delivery tools and more. National and state respite provider training resources are available. We will be periodically highlighting state Lifespan Respite tools, including training curricula, in the newsletter. If you have a tool or news to share, please send it to Jill Kagan at ARCH.

New, from ARCH . . .

Funding Sustainability Tools

The 90 minute session was designed to help Lifespan Respite grantees launch effective and successful sustainability planning efforts by clarifying the concepts, people, steps and critical resources they need to have in place to get started. The webinar is targeted to Lifespan Respite grantees and their partners, but would also be of interest to respite providers, community and faith-based organizations, area agencies on aging, and others interested in an introduction to funding sustainability concepts for respite services. You can view the webinar and download slides and related resources at the Arch Respite website.

The following tools from The Finance Project and from ARCH discussed during the webinar are also available to download and use:

• Finance Project's Tools:
  • Sustainability Self-Assessment Tool
  • Worksheet 1: Clarify What to Sustain
  • Worksheet 2: Determine the Program Cost
  • Worksheet 3: Map the Available Resources
  • Worksheet 4: Assess the Resource Gaps
• ARCH Resources for Funding Sustainability:

  The most significant mission of a statewide Lifespan Respite system is the coordination of existing respite funding streams and other state resources to improve access for all family caregivers. An important component of any sustainability plan for Lifespan Respite systems necessitates that Lifespan Respite grantees identify and maximize the use of those funding streams and potential state partners from the outset of their planning process. To help each grantee accomplish this important task, ARCH has prepared the following documents:

  • Federal Funding and Supports for Respite: Building Blocks for Lifespan Respite Systems, 2012.
  • Home and Community-Based 1915(c) Medicaid Waivers for Respite Support: State-by-State Tables, 2011.
  • State Funding Streams for Respite Across the Lifespan, 2011

These documents may be useful to community or faith based organizations, respite providers, or state respite programs looking for additional funding sources, and for family caregivers who may need help paying for respite.

Fact Sheet 34: Respite for Caregivers of Children with Serious Emotional Disturbance

Finding respite services for a child with challenging behavioral issues can be difficult for families. This fact sheet discusses the definition and characteristics of emotional disturbance, issues for families, program considerations including the referral process, the matching of respite providers and families, training, and evaluation, as well as the need for state involvement in program planning. Model programs, considerations for Lifespan Respite programs, and funding possibilities are included. The fact sheet was written by Susan Dougherty, ARCH Consultant, and reviewed by Louise Barnes, Ph.D., Mental Health Program Planner, Office of Children and Youth, Division of Mental Health Services, TN Department of Mental Health and Substance Abuse Services, and Terry Butler, Inclusive Child Care Program, Oregon Council on Developmental Disabilities and ARCH Advisory Committee Member.

Download a PDF of this fact sheet, or click here to page-through, comment, or share it. Additional ARCH Fact Sheets on respite for specific populations, can be found archrespite website.