National Goals in Research, Practice and Policy for and with People with Intellectual and Developmental Disabilities

Setting a National Agenda for Self-Determination and Self-Advocacy Research, Practice, and Policy
In August 2015, a National Goals in Research, Policy, and Practice working meeting was held in Washington, DC to summarize the current state of knowledge and identify a platform of national goals, organized by 10 focus areas, in research, practice, and policy in intellectual and developmental disabilities. The products were developed in each strand for a variety of audiences with the overarching goal of advancing a research agenda that will influence policy and practice for and with people with intellectual and developmental disabilities over the next 10 years.

View Self-Determination and Self-Advocacy Issue Brief, AAIDD Inclusion Journal Article, and Video

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National Goals in Research, Practice and Policy for and with People with Intellectual and Developmental Disabilities

Setting a National Agenda for Long Term Supports and Services Research, Practice, and Policy
In August 2015, a National Goals in Research, Policy, and Practice working meeting was held in Washington, DC to summarize the current state of knowledge and identify a platform of national goals, organized by 10 focus areas, in research, practice, and policy in intellectual and developmental disabilities. The products were developed in each strand for a variety of audiences with the overarching goal of advancing a research agenda that will influence policy and practice for and with people with intellectual and developmental disabilities over the next 10 years.

View Long Term Supports and Services Issue Brief, AAIDD Inclusion Journal Article, and Video

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National Goals in Research, Practice and Policy for and with People with Intellectual and Developmental Disabilities

Setting a National Agenda for Health and Wellness Research, Practice, and Policy
In August 2015, a National Goals in Research, Policy, and Practice working meeting was held in Washington, DC to summarize the current state of knowledge and identify a platform of national goals, organized by 10 focus areas, in research, practice, and policy in intellectual and developmental disabilities. The products were developed in each strand for a variety of audiences with the overarching goal of advancing a research agenda that will influence policy and practice for and with people with intellectual and developmental disabilities over the next 10 years.

View Health and Wellness Issue Brief, AAIDD Inclusion Journal Article, and Video

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National Goals in Research, Practice and Policy for and with People with Intellectual and Developmental Disabilities

Setting a National Agenda for Family Research, Practice, and Policy
In August 2015, a National Goals in Research, Policy, and Practice working meeting was held in Washington, DC to summarize the current state of knowledge and identify a platform of national goals, organized by 10 focus areas, in research, practice, and policy in intellectual and developmental disabilities. The products were developed in each strand for a variety of audiences with the overarching goal of advancing a research agenda that will influence policy and practice for and with people with intellectual and developmental disabilities over the next 10 years.

View Families Issue Brief, AAIDD Inclusion Journal Article, and Video

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National Goals in Research, Practice and Policy for and with People with Intellectual and Developmental Disabilities

Setting a National Agenda for Aging Research, Practice, and Policy
In August 2015, a National Goals in Research, Policy, and Practice working meeting was held in Washington, DC to summarize the current state of knowledge and identify a platform of national goals, organized by 10 focus areas, in research, practice, and policy in intellectual and developmental disabilities. The products were developed in each strand for a variety of audiences with the overarching goal of advancing a research agenda that will influence policy and practice for and with people with intellectual and developmental disabilities over the next 10 years.

View Aging Issue Brief, AAIDD Inclusion Journal Article, and Video

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Kathleen M. Bishop, Mary Hogan, Matthew P. Janicki, Seth M. Keller, Ronald Lucchino, Dawna T. Mughal, Elizabeth A. Perkins, Baldev K. Singh, Kathy Service, Sarah Wolfson, and the Health Planning Work Group of the National Task Group on Intellectual Disabilities and Dementia Practices (2015)

Guidelines for Dementia-Related Health Advocacy for Adults With Intellectual Disability and Dementia: National Task Group on Intellectual Disabilities and Dementia Practices. Intellectual and Developmental Disabilities, February 2015, Vol. 53, No. 1, pp. 2-29. doi: http://dx.doi.org/10.1352/1934-9556-53.1.2

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Journal of Policy and Practice in Intellectual Disabilities
Volume 11 Number 3 pp 176–191 September 2014

Matthew P. Janicki and Seth M. Keller
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Guidelines for Structuring Community Care and Supports for People with Intellectual Disabilities Affected by Dementia (2013). Jokinen, N., Janicki, M.P., Keller, S.M., McCallion, P., Force, L.T. & The National Task Group on Intellectual Disabilities and Dementia Practices. Journal of Policy and Practice in Intellectual Disabilities, (10)1, 1-24. http://onlinelibrary.wiley.com/doi/10.1111/jppi.12016/abstract
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International initiatives on bridging knowledge, policy and practice, (2012). Leonardi, M., Bickenbach, J., & LeRoy, B. International Journal Of Integrated Care, 12(8). http://www.ijic.org/index.php/ijic/article/view/1084/1919
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The Toronto declaration on bridging knowledge, policy and practice in aging and disability, (2012). Bickenbach, J., Bigby, C., Salvador-Carulla, L., Heller, T., Leonardi, M., LeRoy, B., Mendez, J., Putnam, M., & Spindel, A. International Journal Of Integrated Care, 12(8). http://www.ijic.org/index.php/ijic/article/view/1086/1923

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Dijkers, M.P., Bushnik, T., Allen W., Heinemann, A.W., Heller, T., Libin, A.V., Starks, J., Sherer, M. & Vandergoot, D. (2012)
Archives of Physical Medicine and Rehabilitation, (93), 912-918. Read More...

Bridging Aging and Developmental Disabilities Service Networks: Challenges and Best Practices (2012). Factor, A., Heller, T. & Janicki, M.

This report identifies policy and service delivery issues pertaining to older adults with developmental disabilities and their families and recommends opportunities to enhance collaboration among the aging, disability, and long-term care networks. Key policy initiatives addressed include the Aging and Disability Resource Centers, the Lifespan Respite Act, the National Alzheimer’s Project Act, and the Patient Protection and Affordable Care Act.
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‘My Thinker’s Not Working’: A National Strategy Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports (2012). Janicki, M. & Keller, S.

This report was an outcome of the National Task Group on Intellectual Disabilities and Dementia Practices.  It provides a summary of the challenges facing the nation as we observe an increasing rate of dementia found in older people with intellectual disabilities.The Report offers recommendations for the various stakeholders in the field of intellectual disabilities and anticipates that its findings and recommendations will be considered and integrated into the annual reports and plans developed by the federal Advisory Council on Alzheimer’s Research, Care, and Services. The RRTCADD and the American Academy of Developmental Medicine and Dentistry organized the Task Group and co-authored the report (Download in PDF).
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Impact: Feature Issue on Aging and People with Intellectual and Developmental Disabilities (Winter, 2010). Heller, T., Stafford, P.B., Davis, L.A. & Sedlezky, L. Institute on Community Integration (UCEDD) and the Research and Training Center on Community Living and Employment, College of Education and Human Development, University of Minnesota. Volume 23, Number 1.

Offers fresh, practical, and challenging perspectives on supporting aging individuals with disabilities and their families.

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Residential Characteristics, Social Factors, and Mortality Among Adults With Intellectual Disabilities: Transitions Out of Nursing Homes (2009). Hsieh, K., Heller, T. & Freels, S. Intellectual and Developmental Disabilities. 47(6). 447-465.

Consumer-Directed Goal Planning in the Delivery of Assistive Technology Services for People Who Are Aging with Intellectual Disabilities (2009). Mirza, M. & Hammel, J. Journal of Applied Research in Intellectual Disabilities. 22(1). 445-457.

State of the Science Symposium on Aging and Developmental Disabilities (December 2008). Heller, T. Janicki. M.P., Marks, B., Hammel, J. & Factor, A.

Brief report on the symposium State of the Science in Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Community Living on May 21–22, 2007, in Atlanta, Georgia Read More...

Recommendations for Research, Advocacy and Supports Relating to Siblings of People with Developmental Disabilities (2008). Heller, T., Kaiser, A., Meyer, D., Fish, T., Kramer, J. & Dufresne, D.

This white paper was developed by The Sibling Leadership Network (SLN), a national organization that provides adult siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.  The SLN was founded by the Rehabilitation Research and Training Center on Aging with Developmental Disabilities, the Nisonger Center at The Ohio State University, the Sibling Support Project, and the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities.

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A Community Coming Together to Support Children and Adults with Developmental Disabilities and Their Families: Project for Family Support 360 Final Report (2007). Heller,T., Connolly, K. & Lacey, B.  Chicago: Institute on Disability and Human Development, University of Illinois at Chicago.

This report describes the development and outcomes of a one-stop center that meets the information and support needs of unserved and under-served Chicago area Latino families of children and adults with developmental disabilities.  The center is a unique family driven model that demonstrates how advocacy training enabled these families to obtain long-term funding to sustain the center's operations. This report is available in English and Spanish.

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International Perspectives (2007). Emerson, E., Fujiura, G.T. & Hatton, C. In The Handbook of Developmental Disabilities Odom, S. L., Horner, R.H., Snell, M. & J. Blacher (Eds.) pp. 593-613.

A discussion of international policy and research in the field of developmental disabilities.

ISBN: 978-1-60623-248-4
COST: $51.00 (PAPERBACK); $72.25 (HARDCOVER)
Order directly from Guilford Press:
http://www.guilford.com
or call (800) 365-7006.

Cultural Competence Revisited: Nursing Students with Disabilities (2007). Marks, B. Journal of Nursing Education, 46(2)

Experiences of Families With Relatives With Intellectual and Developmental Disabilities in a Consumer-Directed Support Program (2007). Caldwell, J. Disability & Society, 22 (6), 549-562.

Policies That Shape the Intellectual Disabilities Service System (2007). Fujiura, G. & Parish, S. Mental Retardation and Developmental Disabilities Research Reviews, 13, iii- iv.

Emerging Policy Challenges in Intellectual Disabilities (2007). Fujiura, G. & Parish, S. Mental Retardation and Developmental Disabilities Research Reviews, 13, 188-194.

Aging Family Caregivers: Policies and Practices (2007). Heller, T., Caldwell, J. & Factor, A. Mental Retardation and Developmental Disabilities Research Reviews, 13, 136-142.

The Demography of Intellectual Disabilities: What the Beans Tell Us (2007). Fujiura, G.T. Insight, 1 (4), 12-20.

Aging and Disability (2006). Heller, T. & Marks, B. In G. Albrecht (Ed.), Encyclopedia on Disability, Volume 1, (pp. 67-78). Thousand Oaks, CA: Sage.

ISBN: 9780761925651
COST: $945.00
Order directly from SAGE Publications
http://www.sagepub.com/books
Or Call: 1-800-818-7243

Lessons Drawn From the Critique of the Hissom Closure Evaluation (2006). Fujiura, G.T. Mental Retardation, 44, 372-375

Information About Preparing Community Agencies for Adults Affected by Dementia Project (PCAD Project) (2005). Janicki, M., Dalton, A., McCallion, P., Baxley, D., & Zendell, A.

A preliminary report about the NIDRR funded research project on how community agencies adapt their services for adults with intellectual disabilities. Read More...

Healthy Aging and Community Participation: National Goals, Current Knowledge, and Future Research (2005). Heller, T., Janicki, M. & Hawkins, B.  In K. C. Lakin, & A. Turnbull (Eds.), National Goals and Research for Persons With Intellectual and Developmental Disabilities (pp 311-322). Washington, DC:  American Association on Mental Retardation.

Aging with a Developmental Disability: 2005 White House Conference on Aging Listening Session Testimony (2005). Factor, A.

This brief identifies the issues that aging adults with I/DD and their families face, indicating why their service and support needs should be included in the 2005 White House Conference on Aging Agenda. Read More...

Determinants of State Utilization of Public Institutions for Persons with Intellectual Disabilities in the United States (2005). Rizzolo, M.C., Heller, T. & Braddock, D. Journal of Policy and Practice in Intellectual Disabilities, 2(1), 60-62.

Aiding Older Caregivers of Persons with Intellectual and Developmental Disabilities: A Tool Kit for State and Local Aging Agencies (2005). Baxley, D.L., Janicki, M.P., McCallion, P. & Zendell, A.

This technical assistance manual explains how states can develop aging and developmental disability service network partnerships to better address the needs of older adults with I/DD and the families. It is based on the outcomes of a three-year AoA National Family Caregiver Support Program demonstration the developed and conducted collaboration-building workshops in 33 states. The project was undertaken by The Arc of the United States in collaboration with the Center of Intellectual Disabilities, University at Albany and the Rehabilitation Research and Training Center of Aging with Developmental Disabilities, University of Illinois at Chicago.
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American Journal on Mental Retardation: Special Issue on Family and Service System Supports (September 2004). Heller, T. (Ed.). Volume 109, Issue 5.

Guest Editor: Tamar Heller, Ph.D., Director of the RRTC on Aging and Developmental Disabilities. This issue of the American Journal on Mental Retardation addresses the effects of aging on families caring for persons with intellectual disabilities in Australia, the United States, Israel, and Ireland and discusses the impact on their health and social service systems.

Defining a National Health Research Agenda for Older Adults With Intellectual Disabilities (2004). Davidson, P.W., Heller, T. & Hyer, K. In Journal of Policy and Practice in Intellectual Disabilities (March 2004). Janicki, M. (Ed.). 1(1). pp. 2-9.

Journal of Policy and Practice in Intellectual Disabilities (March 2004). Janicki, M. (Ed.). 1(1).

Matthew Janicki, Ph.D., Editor-in-chief: Associate Director for Technical Assistance of the RRTC on Aging and Developmental Disabilities
The Journal features content related to policy development, service design, working methods and treatment procedures, financial, administrative and legal frameworks. To subscribe, contact Wiley at http://www.wiley.com/WileyCDA/ or 1-800-216-2522

Older Adults with Mental Retardation/Developmental Disabilities and Their Aging Family Caregivers (Rev. March, 2004). Heller, T., & Factor, A.

This fact sheet uses a question-and-answer format to present frequently requested information about aging with mental retardation. It provides an overview of demographics, age-related changes, service and support needs for older adults and their families, and new service models and resources. Read More...

Defining a national health research agenda for older adults with intellectual disabilities (2004). Davidson, Philip W., Heller, Tamar, Hyer, Kathryn. pp. 2-9.

Predictors of Use of Nursing Homes and State Institutions for Persons with DD (2004). Rizzolo, M.K. 

This RRTCADD research brief explains the wide variation in states' use of nursing homes and state institutions compared to community residential options for individuals with developmental disabilities. It also compares the health characteristics of nursing home residents with and without developmental disabilities.

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Disability Research Brief: Evaluation of a Consumer Directed Program: Illinois (2004). Heller, T. & Caldwell, J. 

This research brief presents the outcomes of Illinois innovative consumer-directed Home Based Support Services Program for adults with developmental disabilities and their families. It compares participants and non-participants on service use and satisfaction, community involvement, and the need for out-of-home residential placements.

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Public Spending for Developmental Disabilities in the United States: An Historical-Comparative Perspective (2004). Braddock, D., Rizzolo, M.C., Hemp, R. & Parish, S. In R.J. Stancliffe and K.C. Lakin (Eds.) Cost and Outcomes of Community Services for People With Intellectual Disabilities. Baltimore: Brookes Publishing Company.

This book provides a comprehensive analysis of the cost of community services for individuals with I/DD. It examines the criteria used to allocate funds, differences in outcomes and costs for various service models, and policy considerations in developing individualized services within state systems.

ISBN 1-55766-718-7 
COST: $34.95
Order directly from the publisher’s website:
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or call 1-800-638-3775

Older Adults With Intellectual Disability in Residential Care Centers in Israel: Health Status and Service Utilization (2004). Merrick, J., Davidson, P.W., Morad, M., Janicki, M.P., Wexler, O. & Henderson, C.M. In American Journal on Mental Retardation, 109(5) pp. 413-420.

Supporting Aging Caregivers and Adults with Developmental Disabilities in Future Planning (2004). Heller, T., Caldwell, J. & Factor, A. 

This brief evaluates the outcomes of an innovative training curriculum that equips adults with disabilities and their families with the communication skills and information to jointly plan for the future with the support of peer mentors who have already made plans.

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DD data brief: Service use by and needs of adults with functional limitations or ID/DD in the NHIS-D: Difference by age, gender, and disability (Vol. 5, No.2), (Dec. 2003). Larson, S., Lakin, C., & Huang, J. (Eds.), Research and Training Center on Community Living, Institute on Community Integration, University of Minnesota.

This DD Data Brief summarizes findings from the 1994-95 National Health Interview Survey on Disability. It supplements the April 2001 MR/DD Data Brief on characteristics of and service use by persons with MR/DD living in their own homes or with family members. This brief examines how service use and needs vary by age, gender, and (persons with intellectual and/or developmental disabilities [ID/DD] versus persons with one or more substantial functional limitations who do not meet the criteria of having ID/DD].

Order directly from University of Minnesota at 612-624-4512, http://rtc.umn.edu/nhis or by email: publications@icimail.umn.edu.

DD data brief: Health insurance coverage and health care experiences of persons with disabilities in the NHIS-D (Vol. 5, No.1), (May 2003). Anderson, L., Larson, S., Lakin, C., & Kwak, N. (Eds.), Research and Training Center on Community Living, Institute on Community Integration, University of Minnesota.

This DD Data Brief describes the experiences with public and private health insurance coverage for people with functional limitations, people with I/DD, and people who do not have I/DD or functional limitations. This Brief also examines the variations in these outcomes by gender and age.
Order directly from University of Minnesota at 612-624-4512, http://rtc.umn.edu/nhis or by email: publications@icimail.umn.edu.

Continuum of intellectual disability: Demographic evidence for the "forgotten generation" (2003). Fujiura, G.T. Mental Retardation, 41 (6), 420-429.

Deinstitutionalization movement across states (I & II) (2003). Vol. 67, 150-154 & 233-236.

Research in developmental disabilities services in the United States (I & II) (2003). Vol. 67 310-313 & 390-393.

Policy implications for services to older persons with dementia in Japan (I & II) (2003). Vol. 67. Takeda, N., Yamaki, K., Janicki, M.P., Heller, T., Suemitsu, S., & Egusa, Y. 465-469 & 556-559. Available in Japanese from the Japanese Journal of Public Health, (2003).

Employment and income status of adults with developmental disabilities living in the community (2002). Yamaki, K., & Fujiura, G. Mental Retardation , 40(2), 132-141.

Health Promotion for Individuals with Disabilities: The Need for a Transitional Model in Service Delivery (2002). Rimmer, J.H. Disability Management Health Outcomes, 10(6), 337-343.

Residential settings and outcomes for individuals with intellectual disabilities (2002). Heller, T. Current Opinion in Psychiatry, 15, 503-508.

An eight-year follow-up of the impact of environmental characteristics on well-being of adults with developmental disabilities (2002). Heller, T., Miller, A. B., Heish , K. Mental Retardation, 40, 366-378.

A Junction: Developmental Disabilities Services in the United States and Services to Older Persons With Dementia in Japan (I & II) (2002). Vol. 66, 772-776 & 869-872.

Historical overview of developmental disabilities services in the United States (I & II) (2002). Vol. 66, 931-933 & Vol. 67, 68-72.

Coordinating systems serving carers of children and adults with developmental disabilities (2002). Janicki, M.

Aging adults with intellectual and developmental disabilities face many of the same challenges as other aging adults. Physical aging, social isolation, disengagement from work or activities and challenges of retirement are issues that must be faced by aging adults with cognitive disabilities in addition to the possibility of needing additional assistance from carers to determine their future. This report gives an overview of common definitions, care and support issues, and how systems can partner in the delivery of community support networks. Reproduced with permission of the U.S. Administration on Aging and The Lewin Group.

Promoting healthy aging, family support, and age-friendly communities for persons with developmental disabilities: Report of the 2001 Invitational Research Symposium on Aging with Developmental Disabilities (2002). Heller, T., Janicki, M, P., Hammel, J., & Factor, A.R.

This report summarizes the research to date and presents recommendations for future research, progressive policies, and innovative intervention to promote healthy aging, support aging adults and their families, and create age-friendly communities. These recommendations coalesce the thinking of the 100 plus international researchers, service providers, families and persons with disabilities who participated in the conference.

Using Assistive Technology to Maximize Function in Older Adults with Developmental Disabilities (2002), Alvarez, T., Desi-Thalji, M., Wang, J., Budraja, S., Sundar, V. & Malik, C.

This training curriculum provides information and resources on how assistive technologies (AT) and environmental interventions (EI) can address age related changes in function for older adults with I/DD in every day contexts of the home, workplace, and community. The curriculum's seven modules cover: basic AT-EI products and terminologies; seating, positioning, and mobility; sensory issues; gross and fine motor functioning; communication, cognition, and learning; and the AT_EI delivery process and funding. The training package contains a scripted instructor's guide and power point slides for the seven modules. It was designed for professionals, para-professionals, and families. The content can be tailored to a 2-hour workshop or multiple sessions.

(Manual)
COST PER UNIT: $65.00 + Shipping
(CD-ROM)     
COST PER UNIT: $25.00

Aging and developmental disability: Special issue on current research, programming, and practice implications (2001). Hammel, J., & Nochajski, S. Journal of Occupational and Physical Therapy in Geriatrics, 18(1), 1-4.

Physical & Occupational Therapy in Geriatrics, Special Issue-Aging and Developmental Disabilities: Current Research, Programming and Practice Implications (2000). Hammel, Joy, & Nochajski, Susan M. The Haworth Press, Vol 18 (1).

ISBN: 0270-3181
COST PER UNIT: $60.00
Order directly from the publisher at: www.HaworthPress.com or call 1-800-429-6784.

Community supports for aging adults with lifelong disabilities (2000). Janicki, M. & Ansello, E. (Eds.) Baltimore: Brookes Publishing.

This book provides practical approaches that enable older adults to remain in their homes and communities as they age. It draws on field-tested experiences and situations that can be applied to most settings. Topics include: financing services for older adults, collaboration between community agencies, health promotion, and designing age-related services.

ISBN: 1-55766-462-5 
COST PER UNIT: $58.00
Order directly from the publisher at: www.brookespublishing.com or 1-800-638-3775.

Value-based human resources management (2000). Henry, D.B., Keys, C.B., & Factor, A.R., In M. Janicki & E. Ansello (Eds.), Community supports for aging adults with lifelong disabilities. (271-286) Baltimore: Brookes Publishing.

Staff in health care and human services organizations that serve the general population may not have the skills to communicate with older adults with intellectual disabilities. This may lead to an inaccurate assessment of the individual's needs and to an intervention which isn't appropriate to his/her situation. This chapter explains how organizations can develop and implement management standards based on the values of empowerment, independence, choice, and autonomy to better serve older adults with intellectual disabilities and their families.

ISBN: 1-55766-462-5 
COST PER UNIT: $58.00
Order directly from the publisher at: www.brookespublishing.com or 1-800-638-3775.