STATE LEGISLATION & POLICY
1. California handbook on legal rights of persons with disabilities
The California Attorney General's office has released an updated handbook containing a summary of state and federal laws designed to protect the rights of persons with disabilities. The guide - geared towards helping persons with disabilities and their families - discusses discrimination laws regarding housing, business ventures and education. Also included is information on programs, services, benefits and health care. Access: http://ag.ca.gov/newsalerts/2003/03-147.htm
2. Promising practices in caregiver support among the states
The Centers for Medicare and Medicaid Services (CMS) has posted a series of reports on promising practices in caregiver support. Available on the CMS website: "Vouchers Caregivers Use to Pay for Services - Georgia"; "Supporting Family Caregivers with Payment for Services - North Dakota"; "Resource Counseling and Financial Assistance for Informal Caregivers - Pennsylvania"; and "State-Sponsored Endowed Trust Fund - Washington." Download: http://www.cms.hhs.gov/promisingpractices/caregiver.asp
FEDERAL LEGISLATION & POLICY
3. FY 2004 appropriations on hold
While federal appropriations measures usually go into effect at the end of the previous fiscal year (September 30), lawmakers are still debating appropriations for FY 2004. Funding for many federal departments, including the Administration on Aging, have been condensed into an $820 billion "omnibus" spending bill. In this bill, the National Family Caregiver Support Program would receive $152 million, as well as $6.3 million for Native American Caregivers. This represents an increase of $3 million for FY 2003. The bill still needs final approval by Congress and the President before taking effect. Details: http://thomas.loc.gov
RESEARCH & REPORTS
4. NCC releases policy brief on caregivers and retirement
The National Center on Caregiving (NCC) at Family Caregiver Alliance has released "Retirement Planning: What Happens to Family Caregivers Who Leave the Work Force." The policy brief highlights how retirement income can be affected by caregiving demands, with particular attention paid to the impact on women caregivers. Social Security, savings, pensions and unpaid leave are discussed. Policy recommendations for future action are included. Download: http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1054
5. Partners in Caregiving report on adult-day services
Partners in Caregiving, a program funded through the Robert Wood Johnson Foundation (RWJF) had released "Falling Short: Too Few Adult Day Services Centers." The study found that there are 60% fewer adult day centers than needed to meet the demands of the growing elderly population. Read: http://www.rwjf.org/news/special/adultdayServicesReport.jhtml
6. "Beyond Olmstead and Toward Community Integration
The Center for Health Care Strategies has made available "Beyond Olmstead and Toward Community Integration: Measuring Progress and Change." The report presents the results of a five-month project aimed at assessing the need for a tool that can assist policy makers, program administrators and consumers measure the progress of community integration both nationally and by state. Also included is an analysis of the role of the Americans with Disabilities Act and the Supreme Court's Olmstead decision in ensuring community integration.
7. JAMA article on end-of-life care perspectives
The January 7, 2004 edition of the Journal of the American Medical Association (JAMA) includes "Family Perspectives on End-of-Life Care at the Last Place of Care." The authors conclude that "many people dying in institutions have unmet needs for symptom amelioration, physician communication, emotional support, and being treated with respect. Family members of decedents who received care at home with hospice services were more likely to report a favorable dying experience." View the abstract: http://jama.ama-assn.org/cgi/content/abstract/291/1/88
8. Alzheimer's disease and financial issues
The November 2003 edition of the Journal of the American Geriatrics Society includes "Self- and Informant Report of Financial Abilities in Patients with Alzheimer's Disease: Reliable and Valid?" The authors conclude that "patients with AD overestimate their financial abilities in comparison with the reports of their family caregivers. Both patients and caregivers' reports of patients' financial abilities showed limited stability and validity. The reliability and accuracy of self- and informant reports of financial abilities may be compromised in the context of dementia and caregiving, underscoring the need for direct assessment methods to augment self- and informant report in assessing functional decline in dementia." Abstract: http://www.blackwell-synergy.com/servlet/useragent?func=showIssues&code=jgs
9. The Gerontologist articles on caregiving
The December 2003 edition of The Gerontologist includes a variety of caregiving-related articles: "The Savvy Caregiver Program: Developing and Testing a Transportable Dementia Family Caregiver Training Program"; "Evaluating a Practice-Oriented Service Model to Increase the Use of Respite Services Among Minorities and Rural Caregivers"; "Caregiver Stress and Noncaregiver Stress: Exploring the Pathways of Psychiatric Morbidity"; and "Two Models of Caregiver Strain and Bereavement Adjustment: A Comparison of Husband and Daughter Caregivers of Breast Cancer Hospice Patients." View abstracts: http://gerontologist.gerontologyjournals.org/current.shtml
10. Respite care training pilot project
The November/December 2003 edition of the American Journal of Alzheimer's Disease and Other Dementias includes "Effect of respite care training on the knowledge, attitude, and self-esteem of volunteer providers." According to the authors, "this pilot study explored the effect that respite care training had on volunteers' knowledge about Alzheimer's disease (AD), their attitudes toward the cognitively impaired, and their self-esteem." Journal information: http://www.pnpco.com/pn02009.html
11. National adult day services conference
The National Adult Day Services Association (NADSA) will hold their second annual conference January 30-31, 2004, in New Orleans, LA. "Caring Across the Continuum" will offer attendees 30 concurrent sessions and two plenary sessions covering topics from advocacy and the role of volunteers, to human resource concerns and outcomes. Conference details: http://www.nadsa.org/Annual_conference/2ndannual/2nd_index.htm
12. AAHSA conference in Washington, DC
The American Association of Homes and Services for the Aging (AAHSA) will host the Future of Aging Services conference from March 15-17, 2003 in Washington, DC. Conference information and registration: http://future04.expoexchange.com/
13. Alzheimer's Association "Public Policy Forum"
The Alzheimer's Association will hold their 16th Annual Public Policy Forum in Washington, DC, March 20-23, 2004. The goal of the forum is to provide advocates with opportunities to learn more about Alzheimer's advocacy and receive the tools to effectively advocate in their local communities. Forum details: http://www.alz.org/AboutUs/Events/PPF.htm
14. Alzheimer's Association education conference
The Alzheimer's Association has announced a call for presentations for their annual conference. The conference will be held from July 16-18, 2004 in Philadelphia. Proposals may be submitted online through February 2, 2004. Details: http://www.alz.org/educationconference2004/presentation.htm
15. Alzheimer's disease teleconference
The Hospice Foundation of America's will host the teleconference "Living With Grief: Alzheimer's Disease." This program, moderated by Cokie Roberts, will be broadcast Wednesday, April 28, from 1:30 p.m. to 4:00 p.m. (EST). The expert panel will discuss what is known medically about the diagnosis, progression and treatment of the disease. The panel also will explore some innovative programs for patients and caregivers coping with Alzheimer's; focus on the particular grief issues that patients and families face during the course of this illness; and examine the challenges and opportunities that Alzheimer's disease presents to clinicians, caregivers, hospice workers, and policy advocates. More information: https://www.hospicefoundation.org/teleconference/registration.htm.
FUNDING, MEDIA & MISCELLANEOUS
16. Funding available for expansion of Cash & Counseling
The Robert Wood Johnson Foundation has announced the availability of funds to expand the national Cash & Counseling demonstration. The goal of Cash & Counseling is to expand a proven model of consumer-directed supportive services to more states, allowing more older adults and people with disabilities to have choice and control over the care they receive. Under the new program, as many as 10 states will receive up to $250,000 each over three years to replicate the consumer-directed model. Application deadline is February 13, 2004. More details: http://www.rwjf.org/applying/cfpDetail.jsp?
17. Funding available for "Family Friends" project
The National Center for Family Friends (NCFF) of the National Council on the Aging is inviting applications to establish new Family Friends projects nationwide. Family Friends is an intergenerational volunteer program that pairs older volunteers (men and women age 55 and over) with families who have children with disabilities and/or chronic illnesses. Each week, volunteers at 30 Projects around the country provide support, encouragement and practical assistance to the children, their parents/caregivers and to their siblings primarily in the family's home and other settings. Grant information: http://www.family-friends.org/grant.htm
18. American Red Cross announces new family caregiving initiative
The American Red Cross has announced the launch of a new Family Caregiving program. The Red Cross has developed nine one-hour training and education modules designed to help participants provide better care through video-based and instructor-led information on topics such as healthy eating, positioning and home safety. More details: http://www.aoa.gov/press/enewsletter/archive/
19. PBS to air documentary on Alzheimer's disease
PBS's plans to air the documentary "The Forgetting: A Portrait of Alzheimer's." The two-hour special includes a 90-minute documentary that weaves together the history and biology of the disease and the intense real-world experiences of Alzheimer's patients and caregivers. The program is based on the best-selling book, "The Forgetting - Alzheimer's: Portrait of an Epidemic." Local air times may vary. Information: http://www.tpt.org/NPD/forgetting/index.html
20. Family caregiving and hygiene issues
"Dealing with a Parent Who Abandons Accepted Standards of Personal Hygiene" was developed to help family caregivers work through one of the challenging issues they may face when caring for a loved one. The article offers helpful tips and advice. Download: http://www.caregivershome.com/news/article_2003_12_5_hygiene.html
For questions or further information about Family Caregiver Alliance's National Center on Caregiving, contact us at PolicyDigest@caregiver.org.
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©2004 Family Caregiver Alliance
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