1. What's New

Fun in the Sun: Travel Tips for Getting Away
The lazy days of summer are upon us! Summer is the perfect opportunity to break away from over-booked work schedules and the monotony of home life. Planning vacations or weekend getaways offers most people an opportunity to participate in recreational and cultural activities, as well as rest and relaxation. In this edition of What’s New, caregivers can find helpful tips for traveling this summer, as well as the following resources:

• Travel Tips to Support Caregivers and Their Loved Ones
• Support Groups at Beth Israel’s Family Caregiver
      Program
• Resource for Help with Medicare Coverage for Medical
      Equipment
• Community Choice Act of 2007 and Other Policy
      Initiatives
• Complementary Alternative Medicine (CAM)
• Medication Adherence Study: Does Caregiver Burden
      Impact Patient Adherence?

Caregiver Tips for Traveling with Elderly and Disabled Loved Ones:
Before planning your trip, you may find it helpful to consult with organizations specializing in a particular medical condition, i.e., the American Cancer Society or the Alzheimer's Association for helpful suggestions that address your loved one’s health and mobility needs. In addition, consult with the person’s physician for medical clearance.

The following are other helpful considerations:

• What are your loved one’s barriers? Making a list of what your loved one can and cannot do will clarify what kind of trip you can coordinate. Try to create an agenda that utilizes his or her strengths.
• What is your destination? This will give you a sense of what kind of transportation you will need. Call the local transportation authority to find out what kind of services they provide for people with disabilities. If traveling by plane, check with the airlines for special seating, meals or wheelchair accessible and medical equipment arrangements.
• Where will you be staying? Call hotels in advance to make sure they have the necessary accommodations to meet your loved one’s needs. Try to get a room close to the elevator.
• What is the duration of the trip? The shorter the stay, the more manageable the trip.
• What are your activity plans for each day? Make sure that activities are kept to a minimum and include periods of rest. Stay hydrated by drinking plenty of water.
• Do you have back-up plans in case of an emergency? Find out what are the local medical facilities in that community. Will they have the medications that your loved one needs? Be sure to bring extra medications as back up. Also, be sure to have access to your loved one’s primary care doctor’s phone and beeper numbers, as well as the his/her health insurance card.
• Does your loved one need home health care services in place? Often times, home health agencies have local branches in your destination city. Otherwise, you can check with the local yellow pages or near-by hospitals for home health care recommendations.

The following links offer special advice and resources for individuals with disabilities and their families:

Society for Accessible Travel and Hospitality (SATH):
www.sath.org

Family Village:
www.familyvillage.wisc.edu/Leisure/travel.html

Disability Travel and Recreational Resources:
www.makoa.org/travel.htm

Travel Tips for People with Mobility Challenges: http://www.tsa.gov/travelers/airtravel/specialneeds/index.shtm

Tips That Address Your Loved One's Needs While You Are Away:

• Coordinate your trip with another family member or
     friend who can assume your caregiver responsibilities.
• Hire in-home or residential respite care depending on
    your loved one's needs and your available funds.
• Make others aware of your travel plans if your loved one
     lives in another setting other than your own. Provide
     staff and neighbors contact information of your
     whereabouts.
• Designate someone as the go to person while you are
     gone.

Enjoy your time away and be safe!

New York State Legislation: Paid Family Leave Bill Introduced
On April 20, 2007, a bill was introduced in the New York Senate (S. 4738) to establish a family temporary care insurance program within the state's disability insurance program for workers who need time off to care for an ill family member, including a child, spouse, sibling, parent, grandparent, or in-law. Workers would be allowed up to 14 weeks off to provide care, including "psychological comfort and arranging third party care," and would receive the same benefit as provided to workers taking disability leave. The bill would also establish a task force to report on the usage, costs, and other evaluations of this family care insurance program. For more information on the status of this legislation, visit New York State Legislature at http://www.nysl.nysed.gov/ils/legislature/legis.html

Federal Legislation: Community Choice Act of 2007 (S.799)
Washington, D.C. On March 7, 2007, Senator Tom Harkin (D-IA)
introduced the Community Choice Act of 2007 (S.799)., which would give individuals who are eligible for nursing home services or other institutional care equal access to community-based services and supports. The legislation also provides enhanced federal matching funds to help states develop their long-term care infrastructure and grant funds to help states increase their ability to provide home and community-based services.

Bills Would Expand Child and Dependent Tax Credit to More Family Caregivers
Senator Charles Schumer (D-NY) introduced a bill, the Middle Class Opportunity Act (S. 614), which, among other things, would expand the Child and Dependent Tax Credit to taxpayers who incur caregiving expenses for their parents or grandparents who do not live with them. On April 18, 2007, Representative Joe Donnelly (D-IN) introduced similar legislation (H.R. 1911) in the House to expand the dependent tax credit to more caregiving families. Currently, a caregiver's mother or father must be living with him/her in order to claim the credit. For more information on the status of this legislation, visit the Library of Congress: at thomas.loc.gov

House and Senate Pass Lifespan Respite Care Act
The Lifespan Respite Care Act was signed into law on December 21, 2006, authorizing $30 million in the first year and almost $300 million over five years for competitive grants for states and local governments and agencies to increase the availability of respite care services for family caregivers of individuals with special needs, regardless of age. The bill also promotes a system for coordinating access to respite care at the state and federal levels. For more information, please visit this link.

Guidelines to Create Systemic Support for Family Caregivers
In November 2006, The United Hospital Fund’s (UHF) Families and Health Care Project created a strategy for addressing the needs of New York State’s two million caregivers. Carol Levine, the Director of the Project, is spearheading this policy agenda for examining systemic approaches for improving the quality of life of folks with disabilities and their caregivers. Some of these approaches include the following:

• Assessment of caregiver needs and available services
• Review and update of key policies and practices that
    address caregiver needs
• Mechanisms to coordinate caregiving-related activities
    and policy implementation
• Strengthening local agencies to reach, assess, and
    support caregivers

The full text of both documents (.pdf), developed with support from the Greenwall Foundation, are available online:

New York State Policy Agenda for Family Caregivers http://www.uhfnyc.org/pubs-stories3220/pubs-stories_show.htm?doc_id=424823

An Ethical Framework for New York State Policy Concerning Family Caregivers
http://www.uhfnyc.org/pubs-stories3220/pubs-stories_show.htm?doc_id=424817

For more information: Contact Robert de Luna at 212-494-0733 or email: rdeluna@uhfnyc.org.

Caregiver Conferences

The following is a list of conferences for caregivers:

August 27, 2007
Caring for Family, Caring for Yourself: An Oahu Caregiver's Conference
Waikiki, HI

October 3 - 5, 2007
National Respite Conference
Huntsville, AL

November 1 - 2, 2007
The First International Conference of Grandparents and Other Kinship Caregivers
Brooklyn, NY

June 16 - 19, 2007
National Caregivers Conference
Iseline, NJ

Helpful Caregiving Resources

New Database Tracks State and National Legislation on Caregiving
A new searchable online database of caregiving-related legislation is available at www.caregiver.org. Developed by the National Center on Caregiving at Family Caregiver Alliance (FCA), the database will be updated monthly. The resource includes all federal and state legislation related to family caregiving introduced between 2004 and 2006.

Visit the Federal and State Legislation section of FCA’s website: http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1274

Medicare Interactive
Check out MRC latest monthly webinar archived on www.medicarerights.org/webinars.html and find out about the ins and outs of Medicare coverage for medical equipment you can get to help you at home, including:

• What types of medical equipment Medicare will cover
     and when
• What expenses you must pay
• How new regulations affect your maintenance
     responsibilities
• How to choose your supplier

2. Beth Israel Medical Center Programs

Support Groups for Caregivers and Patients
The Department of Pain Medicine and Palliative Care is offering two time-limited group therapy programs for chronic pain patients and their family members and friends. Group 1 is for chronic pain patients and their family members and friends. The next group will occur in August to be decided. Group 2 is for caregivers of medically ill patients. The second group will meet every week for 6 weeks beginning, August 7th, 2007 until September 11th, 2007.

Group 1: Chronic Back Pain Group: For adults over 18
Phillips Ambulatory Care Center
10 Union Square East, (between 14th and 15th Streets)
2nd Floor, Conference Room 1 or 3
New York City
Time: TBA
Contact: Cynthia Rodriguez, (212) 844-1390 or Denise Flynn, LMSW (212)
844-1281

Group2: Caregiver Support Group: For Caregivers of Medically Ill Patients
Karpas Health Information Center
311 First Avenue (corner of 18th Street)
New York City
Time: 5:00 - 6:30 PM, every Tuesday for six weeks, starting August 7, 2007
Contact: Denise Flynn, LMSW (212) 844-1281

This program is supported in part by a grant from the Sara Chait Memorial Foundation.

Ongoing Support Groups for Caregivers of People with Parkinson's Disease (Dept. of Neurology)
Phillips Ambulatory Care Center
10 Union Square East, (between 14th and 15th Streets)
New York City
Afternoon groups meet in the 2nd floor conference room
Evening groups meet in Suite 5H conference room
Time: Thursday afternoons 2 - 4 PM and
         Wednesday evenings 6 - 8 PM
Contact: Call (212) 844-6134 to register

After-Stroke Support Group for Caregivers and Patients (Dept. of Neurology)
Phillips Ambulatory Care Center
10 Union Square East, 2nd Floor, (between 14th and 15th Streets)
New York City
Time: 4:00 PM to 5:30 PM, every Wednesday
Contact: Daphne Gerson, MSW, at (212) 844-8114 or Agata Woldan, MSW, at (212) 420-2358

At Beth Israel's Karpas Health Information Center:
For a listing of workshops that are available to caregivers, please call Karpas Health Information at (212) 420-4247 or follow this link.

Medication Adherence Study
Is your loved one failing to take his or her pain medications? As a caregiver, are you overwhelmed by managing your loved one’s treatment schedule? If you have answered “yes” to any of these questions, we are interested in hearing from you. Beth Israel’s Department of Pain Medicine and Palliative Care, through the generous support of the Mayday and Milbank Foundations, is conducting a study to explore the impact of caregiver burden and distress on patients’ ability to manage their pain treatments. For more information, please contact Denise Flynn, MSW, at (877) 620-9999 or (212) 844-1281.

3. New Medical Developments

Complementary and Alternative Medicine (CAM) for Cancer
To address the needs of cancer patients seeking CAM information, the National Cancer Institute (NCI) and the National Center for Complementary and Alternative Medicine developed a publication to guide a patient's process in seeking CAM resources. This source features the following:

• Basic description of CAM modalities
• Guidance for evaluating CAM information
• A list of reliable CAM resources
• Tips for talking with traditional healthcare providers about CAM
• Suggestions for finding certified CAM providers

Free copies of Thinking about Complementary and Alternative Medicine are available. To order this booklet, please call NCI's Cancer Information Service at (1800) 4-Cancer or visit: www.cancer.gov/publications

4. Advance Directives

End-of-Life Decisions
Newsweek recently published a guide for caregivers which highlights the special considerations that confront family members who are caring for elderly or terminally-ill loved ones. In this article, one will find helpful tips and resources to help them with information on legal, medical, financial and support issues. For further information, visit www.msnbc.msn.com/id/19121631/site/newsweek.

5. Frequently Asked Questions (FAQs)

Question: My father is in his 80’s and lives alone. I’m concerned that the summer heat will be too much for him. What should I do?

Answer: Hot weather is often a problem for the elderly who can quickly become dehydrated and suffer heat stroke. The following are some suggestions for helping your father stay cool this summer.

• Make sure your father has an air conditioner or fan
     at his disposal.
• Make sure he is drinking plenty of water
    (approximately 6-8 glasses) a day.
• Encourage him to stay indoors and to avoid activities
     during peak sun hours.
• Make sure he has lightweight clothing available.

The following are signs and symptoms of heat stroke: dizziness, nausea, periods of feeling breathless and/or clammy skin. If a victim experiences any of these symptoms, cool him down immediately by keeping him in a shaded area, applying cool water to the skin and ice packs to the armpits and groin areas. Call 911 for further medical assistance.

Question: My mother, who is 74, used to be physically active. However, her bouts with arthritis have prevented her from participating in those activities that used to bring her so much joy like hiking and bowling. She is more isolated now and I’m concerned that she is depressed. What should I do?

Answer: If you are concerned that your mother is depressed, you should have her evaluated by her medical provider. Often, physicians can provide support in terms of medication, counseling, as well as suggestions on safe and alternative activities that your mother can engage in despite her arthritis, i.e. water aerobics. The American Arthritis Foundation also offers helpful suggestions on alternative activities for those suffering from arthritis, in particularly older adults. Staying engaged in activities is important for your mother’s emotional and physical well-being.

This newsletter is made possible by grants from The New York Community Trust and the Jean and Louis Dreyfus Foundation, Inc. in support of the Beth Israel Caregiver Resource Center.