August 2010

Nancy Fiedelman, Eldercare Consultant
Contact info:

Is there long term care insurance available for people with PD?
In Virginia you can apply with a pre-existing condition and it must be covered after 6 months. No policy can exclude dementia.
The rate might not be financially feasible but you can still apply.

VICAP (Virginia Insurance Counseling and Assistance Program) provides free health insurance counseling with info about Medicare, Medicaid, health care denials, and long term care insurance.
Fairfax Area Agency on Aging VICAP webpage
Virginia Department for the Aging VICAP webpage

What can one expect for support from a social worker or caseworker (in the hospital)?

Nancy was a hospital social worker for many years.
Any one hospitalized is entitled to a social worker, case worker, nurse, combination of both. They are available to help you plan for your discharge. Assistance varies from hospital to hospital and social worker to social worker but they are there to provide a safe transition to   nursing home/home. They have access to all medical staff working with the patient. Don’t wait for them to speak to you – seek out your contact so you can be part of planning. Social workers often just give a list of nursing homes or home care agencies and may have limited exposure to the full range of community resources.

Everyone should have an advocate when in hospital.
If it isn’t a family member, then you can hire an aide.
Don’t wait until you’re discharged and not have a plan.
There is a provision under Medicare that you are entitled to a safe discharge plan. This doesn’t include help with an ongoing plan – e.g. 6 months later.
Medicare has a publication –  Your Discharge Planning Checklist that includes an action plan, medications list and resources.
A Family’s Caregiver Guide to Hospital Discharge Planning is another resource.
Alexandra said that in South Australia they produced a brochure and have a consumer group.
Ruth Ann made the point that there are a number of publications related to patient safety and they consistently say patients should have an advocate. HIPAA says you can designate your advocate.
You should have someone with you 24/7. When we’re sick we might not think about things as clearly as when we are well.
Keep a list of medications/dosages/times with you in your wallet. People are told that while they are in hospital they are not allowed to self-medicate but some hospitals will allow this (Johns Hopkins?). You can be proactive. Be pleasant but firm.

What are the most important home renovations to make for accessibility and   safety?
There is a tax credit available for making your home accessible in Virginia equal to 50% of the total cost or $2000. Unused credit can carry over for 5 years.
What it covers: no-step entrance to home, interior doors with 32 inch clear wide opening, reinforcement of bathroom walls, grab bars and light fixtures.
The U.S. Department of Health and Human Services, Administration on Aging has a Home Modification Fact Sheet that includes information about how to pay for home modifications and lists resources to learn more. has a Home Safety Checklist created in partnership with the U.S. Administration on Aging.
Fairfax county has a web page on Resources for Home Modifications for People with Disabilities. Fairfax county used to hold an annual symposium at the Government Center but we’re not sure if it is still being held.

What should we do to prepare for down the road?
Plan ahead!
Legal planning includes wills, trusts, and an Advance Directive (typically includes a health care proxy and living will)
Have conversations with your family members. Don’t wait until something happens.
Make sure family members know how to access your important documents and communicate your desires ahead of time.
Learn about resources in the community before you need them. The Guide to Retirement Living Sourcebook has lots of resources but keep in mind that the companies all pay to promote themselves in the Sourcebook so there are other companies in the community that are not included.
Visit various communities to gather information so you have it should you need it. Take a tour – look at the things the marketing people don’t show   you. Meal times are a great time to check out staffing levels. Visit on any day of the week, not just weekdays during business hours.
Nursing homes have a legal requirement to post staffing patterns. Check that it’s been updated for that day. Check out the Medicare websiteMedicare Compare is a useful tool. Contact the Northern Virginia Long-Term   Care Ombudsmana log of consumer complaints is on the website.
Ask your physician for his opinion but he/she may not deal directly with resources. Work with someone who has knowledge of the various resources.

Locating home care agencies
Depends on your needs and the person’s expertise. Staff are often trained to deal with memory impairments but not Parkinson’s.
The Virginia Department for the Aging has a booklet called Homecare a Resource Guide
Home care agencies may or may not be licensed by Virginia Dept. of Health and you learn more about this on their website. It is best to work with a licensed agency. Some agencies consider themselves licensed if they have a business license but you should look for a home care provider license.
The site has a list of every Medicare-licensed home health care agency in the country called Home Health Compare.
The VA Dept of Health also publishes a directory of licensed home care and hospice providers. The listing doesn’t always include a date for when it was last updated so it’s best to call.

Waivers – some home care agencies can be exempt. e.g. homemaker/companion/chore services do not have to be licensed because they do not involve hands-on care.
Nancy has a list of questions to ask. You can contact Nancy if you’d like a copy.
Ask home care agencies if they have people on staff who have worked with people with PD.
Agencies have different employment styles such as independent contractors, registries, or employees.
There are different types of agencies:
* companion – no training required
* CNA (Certified Nursing Assistant) help with bathing, eating and other Activities of Daily Living. An RN may provide supervision but not medical care.
* Medicare certified home care provides all levels of care and will have an RN on staff. Some provide therapy, some have limited social work services. Non-skilled services not covered by Medicare.
Before you call an agency, decide what you’re looking for so you can tell an agency what you’re looking for. Do your homework ahead of time to decide how much time you need help. Costs average around $18-22/hour.

What costs are covered by Medicare?
Medicare and Homecare is an official U.S. Government publication
There are four criteria to be eligible for home care under Medicare.

Respite care
Respite care is a general term – when someone is allowed to live in assisted living community to give the caregiver a break or to try out a community before they decide to live there. The term is used for resources that one might receive at home and in a skilled nursing facility as well. There may be a minimum and/or maximum number of days.
Limited services are available through Fairfax county including a companion registry. Some services are income dependent.
• Fairfax county’s booklet “When You Need a Break: A Guide to Fairfax Area Respite Resources for Family Caregivers.” This listing is not inclusive and not necessarily vetted.
•    Fairfax county’s Family Caregiver Support Program page.
• There are six adult day programs in Fairfax county.
Alzheimer’s Family Day Center

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