Practical Oral Care for People with Developmental Disabilities.
This seven-booklet packet contains the basic information dental professionals and carers need to provide quality oral health care to people with intellectual and developmental disabilities. Booklets can be viewed on line and downloaded from the National Institute of Dental and Craniofacial Research website www.nidcr.nih.gov. Print copies are available at no cost from the National Oral Health Information Clearinghouse at Email and (301) 402-7364.
Guide for Navigating Medicaid and Medicare.
The Consortium for Citizens with Disabilities has created a set of seven fact sheets to educate people about the impact of the privatization of Social Security on people with disabilities. The fact sheets can be downloaded from the Consortium's website www.c-c-d.org.
The New York State Arc (NYSARC).
NYSARC has two new resources addressing end-of-life care for older people with intellectual disabilities and their families. These include the following:
End-of-Life Care: A Guide for Supporting Older People with Intellectual Disabilities and Their Families.
(The New York State ARC, Botsford, A. & Force, L.T. ,2004 Edition).
This comprehensive manual on end-of-life care addresses death education, advanced planning, active dying (palliative care and hospice), bereavement, supports for carers, and end-of-life legal, ethical, and policy issues. It provides valuable day-to-day information for direct care staff, service coordinators, clinicians, administrators, and families faced with the end-of-life care of a loved one with developmental disabilities. The companion resource supplement contains information on end-of-life legal issues including advance directives, organ donation, non-hospital DNR orders, and health care proxies. The cost is $19.95 + 8% tax ($14.95 for NYSARC members) for this two-handbook set. To order, contact the New York State ARC office at 518-439-8311 or visit www.nysarc.org.
Last Passages Project: Train-the-Trainer End-of-Life Care Training.
The NYSARC is providing 1½ day workshops to improve the range of choices and quality of care for persons with developmental disabilities who are nearing the end of life. Participants learn how to transform death and dying from a critical incident to a natural end of the life cycle for people with intellectual/developmental disabilities and their families. The training is for administrators, staff, families, and other professionals who have training experience and an interest in aging with developmental disabilities.
Participants will be able to:
1. understand their own feelings related to the dying process and bereavement.
2. support families, colleagues, and housemates of people who have died.
3. help individuals with disabilities and their families plan and make decisions regarding the end of life.
4. comply with the administrative/legal requirements associated with the death of someone in their care.
The curriculum is based on a national demonstration project undertaken by Volunteers of America, Inc. in collaboration with NYSARC, Inc., the University of Albany, and Marist College. Three train-the-trainer workshops, supported by the New York State Developmental Disabilities Planning Council, are scheduled for May 12-13 in Binghamton, June 7-8 in Buffalo, and June 8-9 in Rochester. Training is free of charge to New York state families and staff and costs $150 for non-residents. Participants receive the trainer guide and a CD-ROM containing presentation power points and handouts. Contact the NYSARC at (518) 439-4311 or visit www.nysarc.org.
Grief in the Shadows: Exploring Loss and Bereavement in People with Developmental Disabilities.
(Clements, P.T., Focht-New, G., & Faulkner, M.J., 2004). Issues in Mental Health Nursing, 25, 799-808.
AAMR Fact Sheet: Older Adults and Their Aging Caregivers.
This updated fact sheet provides frequently requested information about aging with intellectual/developmental disabilities. It includes demographic data and discusses age-related changes, service and support needs of older adults and their families, and new service models and resources. Can view and download at no cost from the AAMR website www.aamr.org.
Cost and Outcomes of Community Services for People with Intellectual Disabilities.
R.J. Stancliff and C. Lakin (Eds.) 2004. This book presents a comprehensive analysis of the cost of community services for individuals with I/DD., including the criteria used to allocate funds, variations in service model outcomes and costs, and state policy considerations in developing individualized services. ISBN 1-55766-718-7; Cost $34.95. Order directly from Brookes Publishing at www.brookespublishing.com or 1-800-638-3775.
The State of the States in Family Caregiver Support: A 50-State Study
(Family Caregiver Alliance, 2004) examines publicly funded caregiver support programs provided through the Older Americans Act’s National Family Caregiver Support Program and the Aged/Disabled Medicaid waiver programs. Individual state profiles include funding sources, services provided, and factors affecting family support program expansion. This research study was done in collaboration with the National Conference of State Legislatures and is available online at www.caregiver.org.
Functional Caregiving: A New Construct for Mother’s Caregiving to Adult Children with Intellectual Disabilities.
(Chen, S.P.C., Ryan-Henry, S., & Bezruczko, N., 2004) International Journal of Nursing in Intellectual & Developmental Disabilities, 1(2). This journal is published by the Developmental Disabilities Nurses Association. The article can be viewed and printed at journal.hsmc.org/ijnidd.
Older Americans 2004: Key Indicators of Well Being.
A chartbook by the Federal Interagency Forum on Aging Statistics, provides a unified picture of the health and well being of Americans age 65+. View and print the report at www.agingstats.gov..
New NCPAD Streaming Video Publication: Exercises for Persons with Intellectual Disabilities.
This National Center on Physical Activity and Disability video demonstrates exercises designed to improve a person’s flexibility. It can also be used as a warm-up or cool down activity for brisk walks or other types of exercise sessions. View at www.ncpad.org/videos/fact_sheet.php?sheet=284.