American Occupational Therapy Association, Inc.

Founded in 1917, the American Occupational Therapy Association (AOTA) represents the interests and concerns of more than 140,000 occupational therapists, assistants and students nationwide. Based in Bethesda, MD, the Association educates the public and advances the profession of occupational therapy by providing resources, setting standards including accreditations and serving as an advocate to improve health care. Occupational therapy enables people to live life to its fullest by helping them promote health, prevent—or live better with—injuries, illnesses, or disabilities. Occupational therapists and occupational therapy assistants focus on "doing" whatever occupations or activities are meaningful to the individual. These activities may be adaptations for how to do a task, changes to the surroundings, or helping individuals to alter their own behaviors. Strategies and modifications are customized for each individual to resolve problems, improve function, and support everyday living activities. AOTA's Media Relations team and other staffers responded to the following questions:

1. What prompted the development of the AOTA?

Established in 1917 as the National Society for the Promotion of Occupational Therapy (NSPOT), the organization was founded by consumers and health professionals in an effort to give life and direction to the then fledging field of occupational therapy practice. In 1923, the organization changed its name to the American Occupational Therapy Association (AOTA). AOTA's leadership helped create the Industrial Rehabilitation Act, and it assisted with moving occupational therapy into a continuing and significant role in hospitals.

Over the years, AOTA has helped advance clinical research in countless areas of practice that serve individuals with nearly every imaginable disability or impairment across the lifespan. AOTA has also worked with colleges and universities throughout the United States to create professional-level courses of study to assure a high quality of practitioners in the field and advocated for the occupational therapy profession on Capitol Hill and in state capitals throughout the country.

Today, the 43,515 member-strong association exists to advance the quality, availability, use, and support of occupational therapy through standard-setting, advocacy, education, and research on behalf of its members and the public. Members reside in all 50 states, the District of Columbia, and internationally. (A more detailed history is available here: http://www.aota.org/About/39983.aspx

2. How might a family caregiver or helping professional use the AOTA's programs?

Occupational therapy is unique in that it takes on a holistic approach to health care. By considering a patient's occupations (activities) and goals, occupational therapy practitioners use every day activities to build skills and regain function. Caregiving is an occupation which may engage individuals of all ages. It can encompass activities throughout the lifespan from caring for children with disabilities through meeting the needs of older adults.

Among AOTA's top priorities is aiding the growing aging population. By 2030, 20% of the American population will be over 65 years of age. At present, families are the informal caregivers who provide over 90% of care for loved ones. AOTA has an online toolkit available to provide guidance to caregivers. It includes presentations to community agencies, support groups for caregivers, and all other venues where occupational therapy can provide expertise in this area. The contents of the toolkit may be used by both practitioners as well as consumers who can select items relevant to their areas of concern. Specific toolkit topics can be accessed here: http://www.aota.org/Practitioners/Resources/Collections/Resources.aspx

3. What are key issues that are being addressed currently?

The American Occupational Therapy Association works to promote the advancement of occupational therapy across the lifespan. AOTA's major programs and activities are directed toward assuring the quality of occupational therapy services, improving consumer access to health care services, and promoting the professional development of members.

AOTA's efforts to promote optimum coverage of occupational therapy for individuals as well as education and training of families and other caregivers underlies AOTA's advocacy in Medicare. AOTA is working to protect against unreasonable annual limits on use of therapy under Medicare and other insurance programs. AOTA is also working to promote full utilization of occupational therapy as part of the Medicare home health benefit, which is often the choice of post-acute or continuing care by consumers and their families. AOTA also works to protect consumers by promoting effective, contemporary licensure laws in states. Licensure and the ability to bring grievances to a public entity help protect consumers from receiving inappropriate or inauthentic occupational therapy.

Our annual Older Driver Safety Awareness Week is held the first week of December and offers resources to older drivers and their families. The goal is to keep older drivers confident and comfortable in their vehicles and maintain mobility as well as providing a means for adult children and caregivers to approach the topic of a loved one's driving habits. Autism spectrum disorder, stroke, physical disabilities, arthritis, traumatic brain injury, and post-traumatic stress disorder are also addressed by occupational therapy practitioners.

4. Are there any future plans for the Association?

We envision that occupational therapy will remain a powerful, widely recognized, science-driven, and evidence-based profession with a globally connected and diverse workforce meeting society's occupational needs.

We hope to expand our programs and the utilization of occupational therapy practices as the health system changes. Occupational therapy should be in the first tier of services for many individuals as the system moves to more coordinated, interconnected service systems. We are working to promote occupational therapy as a "primary" service to meet many needs, especially those with chronic conditions.

AOTA wants to work with family physicians, nurses, and other health care practitioners as part of a broad team approach that has as its goal real "health" in its broadest configuration. This includes many lifestyle issues, routines, habits, and daily activities (e.g., managing complex medication schedules) that affect how people can self-manage critical aspects their own health and that of those who care for them.

5. Is there anything else you would like people to know?

In its simplest terms, occupational therapy practitioners help people across the lifespan participate in the things they want and need to do through the therapeutic use of everyday activities (occupations). Common occupational therapy interventions include helping children with disabilities to participate fully in school and social situations, helping people recovering from injuries to regain skills, and providing supports for older adults experiencing physical and cognitive changes.

Occupational therapy fields of practice include Children and Youth, Healthy Living, Mental Health, Aging, Disability and Rehabilitation, and Work-Related topics. Occupational therapy services typically include:

• Customized treatment programs to improve one's ability to perform daily activities.
• Comprehensive home and job site evaluations with adaptation recommendations.
• Performance skills assessments and treatment.
• Adaptive equipment recommendations and usage training.
• Guidance to family members and caregivers.


6. If readers have other questions, how can they obtain more information?

Visit the American Occupational Therapy Association online at www.aota.org, or contact Katie Riley, AOTA's Media Relations Manager, for more information. Follow us on Twitter and/or join us on Facebook. The Association is located at: 4720 Montgomery Lane, Bethesda, MD 20814-5320; (301) 652-6611.

May 30

The ARCH Webinar: Introduction to a Framework for Sustainability Planning for Lifespan Respite Grantees and their Partners will be held on Wednesday, May 30, 2012 3:00 - 4:30 pm (Eastern Time). The presenter will be Laura Martinez, Senior Program Associate, The Finance Project, Washington, DC. The goal of the webinar is to introduce a comprehensive approach to sustainability planning for Lifespan Respite grantees and their partners. The interactive webinar will present . . . (continued)

a framework for sustainability planning that provides grantees with a process for working with their partners and other key leaders in the State to sustain Lifespan Respite programs.

The 90 minute session is 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. This includes a clear focus on:

• Providing proven, comprehensive sustainability planning framework that grantees can use to design sustainability plans for their programs;
• Developing a Strategic Financing Plan; and
• Helping grantees understand how to benchmark their progress toward sustainability based on the results of the self-assessment and identify priorities for future planning work.

The webinar is targeted to Lifespan Respite grantees and their partners, but the webinar 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. The Finance Project is a specialized non-profit research, consulting, technical assistance and training firm for public and private sector leaders nationwide. The Webinar will be presented by Laura Martinez, Senior Program Associate with the Finance Project. She holds a Master's of Public Policy degree from the University of Chicago and a Bachelor of Arts in Economics from the University of Arizona. Webinar participation will be limited, so please register early.

June 1

The 8th International Respite Conference will be held at Le Meridien King Edward Hotel in Toronto, Ontario, Canada, October 10-12, 2012. Administrator of the Administration for Community Living and Assistant Secretary for Aging Kathy Greenlee at the U.S. Department of Health and Human Services has tentatively accepted an invitation to speak at the conference.

In addition to emerging information on innovative respite approaches for all ages from around the world, the conference will offer numerous Lifespan Respite workshops through a Lifespan Respite Track, and U.S. respite programs and research will be highlighted. ARCH Respite Network is a member of the International Short Break Association, which is sponsoring the conference. ARCH serves on the conference planning committee and is supporting the effort. Register at www.isba2012.net.

June 7 and 14

Two Webinars: The 2012 Webinar Series Part II: Tackling the Tough Topics in Ethnogeriatrics is sponsored by Stanford Geriatric Education Center in conjunction with American Geriatrics Society, California Area Health Education Centers, & Natividad Medical Center. Sessions include . . . (continued)

An Ethnogeriatric Perspective on Health Literacy and Medication Use in Emergency Preparedness on June 7 at 12-1:30pm (Pacific Time) and Helping Elders At Risk in the Community: Emergency Preparedness and Response from Key Service Providers and Emergency Personnel on June 14 at 12-1:30 pm (Pacific Time). Register and get more info at this Stanford website.

June 13, and July 12

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

Session #2: On-line Tools & Resources to Assist Individuals with Dementia and Caregivers: National Alzheimer's Contact Center, Eldercare Locator and ADEAR (Alzheimer's Disease Education and Referral Center) is scheduled for June 13, from 10:30-12:00 pm (Pacific Time). Session #3: Connecting the Aging Network, Individuals with Dementia, and Caregivers with Research Opportunities is scheduled for July 12, from 10:30 am-12:00 pm (Pacific Time). For more information, visit the AOA website.

June 21-24

The Hearing Loss Association Convention will be held at the Rhode Island Convention Center, One Sabin Street, Providence, RI, June 21-24. David Myers, Ph.D. a social psychologist at Hope College and the author of . . . (continued).

. . . A Quiet World: Living with Hearing Loss, will give the keynote address: Accelerating Progress toward the Looping of America and Doubled Hearing Instrument Functionality. In addition, a Research Symposium will be held in which How the Brain Makes Sense of the World of Sound will be presented by medical professionals and researchers of Johns Hopkins University on June 22. Information and Registration

August 17 - Deadline

With continuing support from The Rosalinde and Arthur Gilbert Foundation, Family Caregiver Alliance (FCA) is pleased to oversee the annual Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards program which is now in its fifth year. The program stimulates innovation in the field by . . .(continued)

. . . recognizing and rewarding those efforts which lead the way in addressing the needs of Alzheimer's disease caregivers. The deadline to apply is August 17, 2012. Visit the Award Application page; Read FCA's blog post about the 2011 Award Recipients and Award Reception.

NAC and MetLife Foundation Launch New Grants Program: Innovations in Caregiving

The grants will provide $10,000 to each organization for startup funds to adapt programs/best practices that were identified as model programs of the previous MetLife Foundation/National Alliance for Caregiving Family Caregiving Awards initiative. These five winners were chosen based on their innovation, collaboration, sustainability and effectiveness in replicating a program/best practice for caregiver needs in their own communities. [Information]

Go4Life: Public-private Effort Led by NIA/NIH Reaches Out to Baby Boomers and Others

"If we want to become a healthy and fit nation, we need to increase the number of Americans who are healthy at every stage of life," said U.S. Surgeon General, Regina Benjamin, MD, "Go4Life provides older adults with the tools and resources to get moving and keep moving. With the release of the National Prevention Strategy, we are moving our health care system from a focus on sickness and disease to a focus on wellness and prevention."

The research-based resources of the Go4Life center on an interactive website provide information and motivation for exercise for individuals, families and friends, organizations, and health care professionals. The site features specific exercises, success stories, and free materials to motivate growing numbers of older people to start exercising and keep going. Many Go4Life materials are available in Spanish and English.

Nostalgia and Caregiving

However, she explains that two programs supporting caregivers (Lifespan Respite and the National Family Caregiver Support Program) continue to be underfunded. The Next Step in Care recently collaborated with CMS to create six podcasts called ""Helping Patients & Family Caregivers Take the Next Step in Care: Medication Management." To read Levine's post or listen to the podcasts, visit: Carol Levine: Family Caregiving Myths, Past and Present and Helping Patients & Family Caregivers Take the Next Step in Care: Medication Management.

State Respite Events: Past, Present and Future

Delaware: Two member organizations of the Delaware Lifespan Respite Network -- Delaware Family Voices and the MS Society -- joined Easter Seals in holding its 3rd Annual Caregiver and Respite Conference on Friday, April 27, 2012 in New Castle, DE. Of the almost 100 people who participated, 75% were caregivers! The theme of this year's program was "Relax, Recharge, Rejuvenate with Respite". The Honorable Rita Landgraf, Secretary of the Delaware Department of Health and Social Services was the keynote speaker. Conference sessions included topics such as: compassion fatigue, overcoming barriers to respite care, financial planning for the future, assistive technology, and relaxing techniques through yoga. The program was partially funded by the Delaware Division of Services for Aging and Adults with Disabilities, the state administering agency for the Lifespan Respite grant. Blue Cross blue Shield of Delaware also sponsored the event. This was the first year that the Respite Summit was combined with a Caregiver Conference, which helped attract more family caregivers to the event. For more information, contact Nancy Chipman Ranalli, Director of Community Outreach and Assistive Technology, Easter Seals, [email protected], (302) 221-2033.

Illinois: The Illinois Respite Coalition hosted its annual Illinois Lifespan Respite Summit, Are You Linked to Respite? on April 13, 2012 in Chicago, IL. The keynote speaker was R. Dale Evans, Sr. from Joliet, IL. As the FSS Social Services Coordinator with the Joliet Housing Authority, and through his work with the A Boost Up Coalition Inc., he shared his experience in marketing, relationship building, and budgeting skills. Other speakers included Sherri Schneider, Founder, Family Benefit Solutions; Sue Castles, Training Coordinator, Illinois Assistive Technology; and Juan Aponte, Director, Community Alternatives Unlimited. For more information about the event, contact Julie Pandya, Illinois Respite Coalition at [email protected], (630)529-2871, Ext. 3242.

Nevada: On June 29, 2012, the Nevada Lifespan Respite Program in collaboration with the Nevada Lifespan Respite Coalition, will hold a statewide one-day Lifespan Respite Summit with video conferencing sites in Las Vegas, Reno and Elko, NV. The Nevada Lifespan Respite Summit is an opportunity to discuss respite supports and services in Nevada and the future of such services. Invited participants include representatives from families engaged in giving care, stakeholder groups, including respite providers, human resources, social services, developmental disabilities, public health, mental health, maternal and child health, and aging services, and others who are interested in the future of respite and respite services in Nevada. For more information, contact Cheryl Dinnell, Coordinator, Nevada Lifespan Respite Care Program, [email protected], 775-315-1103. To register for the summit, visit the ARCH Registration site.

District of Columbia: The District Lifespan Respite grantee agency, in collaboration with the DC Respite Coalition, will host an ARCH sponsored Lifespan Respite Summit on July 11, 2012, and the location will be announced.

If you have a state respite event you would like to share with the Lifespan Respite Network, please send it to ARCH.

Respite for Individuals with Autism

As parents age, respite may become even more important, but the respite options fewer. Resources are needed to develop model programs that are tailored to serve this population and be meaningful for them.

For an adult with autism, respite can be the bridge to living outside the family by helping to build skills needed for independent living. Out-of-home respite care can enable families to test this option, explore community resources and prepare themselves and their family member with autism to live in the community. Social or recreational activities in mainstreamed settings can help improve peer to peer relationships for young adults with autism and provide respite for family caregivers at the same time. Since specific programs designed for adults with autism may be more difficult to find and training programs also limited, consumer-directed respite that allows family caregivers to select in-home or out-of-home providers or services, and hire and train their own respite workers may provide more options.

The new fact sheet is intended to provide a basic overview of useful information for respite providers who work with individuals and families affected by Autism Spectrum Disorder. It is also meant to assist Lifespan Respite grantees and their collaborators by increasing their understanding of the unique needs of this population and their family caregivers. Such insight and direction will help State Lifespan Respite programs and others develop strategies to increase respite quality, access, and capacity for this population through partnerships with community-based services and enhanced provider recruitment and training efforts. It is also intended to offer resources for family caregivers seeking to expand respite opportunities for themselves and others. To view or download the fact sheet, visit the archrespite website.

Building a National Agenda for Supporting Families with an Individual with Developmental or Intellectual Disabilities

more than 75% of respondents reported problems finding respite and other vital supports. The study findings were originally reported in the July 2011 Newsletter of the Technical Assistance Centers, Vol. II, Number 5.

In March 2011, ARCH was invited along with a group of diverse national and state family support leaders and stakeholders to participate in a three-day intensive conference held at the Johnson Foundation's Wingspread Conference Center in Racine, Wisconsin. The conference was sponsored by the U.S Administration on Developmental Disabilities and the Johnson Foundation at Wingspread. The purpose of the conference was to generate recommendations for a National Agenda on Family Support for families of people with intellectual and developmental disabilities (I/DD). Because of the role that families continue to play in the lives of their family members with intellectual and developmental disabilities, future policies and practices must reflect the family as part of the system of support. The goal of Building a National Agenda for Supporting Families with an Individual with Developmental or Intellectual Disabilities is to advance policy and strategies at the federal and state level for building an infrastructure for supporting families of people with developmental disabilities. This document outlines recommendations, including support for Lifespan Respite programs, that must occur to ensure that individuals with I/DD are fully integrated and included in society and that the important role of families is recognized.

View, download, or print this document. You can also post comments with your feelings and reactions to the document in an interactive format.

State Lifespan Respite News You Can Use

Pennsylvania: The Pennsylvania Department of Aging, the state's Lifespan Respite grantee, recently announced the recipients of a Lifespan Respite small grant opportunity. Funding went to Pennsylvania's UCP/Class, Access Services, and Allegheny Lutheran Social Ministries. The grant program was developed and will be administered by the Lifespan Respite Advisory Council in conjunction with the Department of Aging and the Aging and Disability Resource Center Program.The grants are targeted toward the provision of respite in areas of unmet need, particularly emergency situations. Most of the funds will be distributed to families through respite vouchers that allow family caregivers to hire and train their own respite providers. For more information, contact Jennifer Crossley-Hale, Program Manager, PA Link Network/Aging & Disability Resources, Department of Aging; 717.783-4502; [email protected]

Connecticut: The CT Lifespan Respite Coalition launched a new version of its website http://www.ctrespite.org which features: 1) a database of statewide resources for short break help to families that includes an easy to use query tool; 2) a "happenings" page publicizing family caregiver events, news and important announcements; and 3) a link to results from CT caregiver surveys and focus groups held around the state. The site also includes a Respite Provider Survey of respite care agencies and service organizations, developed in conjunction with the CT Department of Social Services (DSS) under the Lifespan Respite grant, to obtain descriptive information about available respite services. The Coalition plans to include Spanish translation of its website and a blog in future enhancements. For more information, contact Peaches Quinn, Connecticut Lifespan Respite Coalition at [email protected].

Tennessee: Looking for a way to raise community-based local funding for respite? For one week in May, the Tennessee Respite Coalition (TRC) teamed up with Groupon Grassroots, the philanthropic arm of Groupon, to support respite for family caregivers in Tennessee. Groupon, launched in November 2008, is a tremendously popular website that features daily deals on the best to do, see, eat, and buy in 48 countries. Groupon Grassroots is a community outreach initiative of Groupon that brings people together philanthropic purposes. With this initiative, the TRC asked people in Nashville to support their respite voucher program by purchasing an hour of respite for $5. The campaign was publicized through Groupon's large mailing list in Nashville, helping to raise awareness about respite while raising funds. For more information, contact Jennifer Abernathy at the TRC at [email protected].

Colorado: At press time, CO House Bill 1226 had passed both the CO House and Senate and was expected to be signed by the Governor. Easter Seals Colorado orchestrated the introduction of House Bill 1226 and the Colorado Respite Coalition supported it. The bill imposes a surcharge on persons convicted of crimes, including identify theft, against at-risk adults and at-risk juveniles. Monies from the surcharge fund, which will be administered by the State Unit on Aging and will be used to support respite programs and services for family caregivers of children, youth and adults with special needs across the State. More information about the bill can be found in the April 2012 Newsletter of the Technical Assistance Centers, Vol. III, No. 8.

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. 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.