Blog Archive

Feb

How good is your wheelchair etiquette?

Have you ever had to use a wheelchair or assist someone who was in one? For the first time in my life I had to use one and the world sure does look different from a seated perspective. I have worked with people in wheelchairs and have had friends in wheelchairs but never before could I really appreciate how the world appears from their vantage point.

A few things that came up in my experience were using the elevator and parking the wheelchair. Facing the back of the elevator and looking at the wall was rather boring and being parked in line behind other people was an accident waiting to happen. Here are some other tips to keep in mind.

Focus on the person, not on his or her disability.
It is appropriate to shake hands with a person who has a disability, even if they have limited use of their hands or wear an artificial limb.
Always ask the person who uses a wheelchair if he or she would like assistance before you jump in to help.
Don’t hang or lean on a person’s wheelchair.
Speak directly to the person who uses the wheelchair.
If your conversation lasts more than a few minutes, consider sitting down, etc. to get yourself on the same eye-level as the person who uses the wheelchair. It will keep both of you from getting a stiff neck!
Don’t demean or patronize the person who uses a wheelchair by patting him or her on the head.
When giving directions, think abut things like travel distance, location of curbcuts and ramps, weather conditions and physical obstacles that may hinder their travel.
Don’t discourage children from asking questions of a person who uses a wheelchair about their wheelchair. Open communication helps overcome fearful or misleading attitudes.
When a person who uses a wheelchair “transfers” out of the wheelchair to a chair, pew, car, toilet or bed, do not move the wheelchair out of reach. If you think it would be best to move it for some reason ask the person who uses the wheelchair about the best option for them.
It is OK to use expressions like “running along” or “let’s go for a walk” when speaking to person who uses a wheelchair. It is likely they express the idea of moving along in exactly the same way.
People who use wheelchairs have varying capabilities. Some person who use wheelchairs can walk with aid or for short distances. They use wheelchairs because they help them to conserve energy and to move about with greater efficiency.
Try not to think of people who use wheelchairs as “sick.” Wheelchairs are used to help people adapt to or compensate for the mobility impairments that result from many non-contagious impairments. Some of these are, for example, spinal cord injury, stroke, amputation, muscular dystrophy, cerebral palsy, multiple sclerosis, post polio, heart disease, etc.
Check your assumptions! Don’t assume that using a wheelchair is a tragedy. Wheelchairs when they are sell fitted and well chosen are actually a means of freedom that allows the user to move about independently and fully engage in life.

Disability.gov connects the disability community with information and opportunities http://www.disability.gov/.

Feb

Patient advocates

For the last few weeks I have had to muddle my way through the sometimes convoluted health care system. I have been lucky enough to remain healthy for most of my life and stayed out of hospitals except for work. I am finding out now how overwhelming the process can become. There multiple challenges that include insurance billing and other administrative tasks that no one feels like dealing with when they are not feeling their best. Along the way I learned about patient advocates when I kept receiving a denial of claims and tried to resolve the issue with a particular hospital in my area. It had previously taken me 3 years to correct some other information and with surgery coming up I was worried that this could turn into a paperwork nightmare.

The hospital’s billing office was of no help so I put a call out on Twitter to the hospital explaining in 140 characters that I needed help. Believe it or not help came in the form of the social media manager for the hospital. She took my information and called back the next morning with some answers. So far the problem seems to be resolved. The social media manager then told me about patient advocates. They help those who are receive medical care and their loved ones get adequate medical attention. Both men and women who act as patient advocates are a type of middle person, communicating the desires of a patient to those in charge of that person’s medical treatment.

Some of the ways an advocate can help are:

Informing the patient about the choices they have when it comes to medical procedures
Resolution of payment challenges
Setting up doctors visits and locating the best possible doctor to perform an operation
Going to doctor’s appointments with the patient
Staying by the bedside
Learning more about the medical condition and treatments
Help make difficult medical decisions
Navigate the insurance maze
File health insurance claims
Find legal assistance after a medical error
Track paperwork and records

You can Inquire at your hospital about patient advocates or look online. One website I found to help is the following:

Advoconnection links patients to health care assistance http://advoconnection.com/index.asp.

Jan

What is Palliative care?

Palliative care is the medical specialty focused on improving the quality of life of people facing serious illness. Emphasis is placed on pain and symptom management, communication and coordinated care. This type of care is appropriate from the time of diagnosis and can be provided along with curative treatment.

The point of palliative care is to relieve suffering through pain and symptom management, communication and coordination of your care. But it is not a one-size-fits-all approach. Palliative care treats people suffering from serious and chronic illnesses including cancer, cardiac disease like Congestive Heart Failure (CHF), Chronic Obstructive Pulmonary Disease (COPD), kidney failure, Alzheimer’s, HIV/AIDS and Amyotrophic Lateral Sclerosis (ALS).

Palliative care relieves symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping. It helps you gain the strength to carry on with daily life. It improves your ability to tolerate medical treatments. And it helps you to better understand your choices for care.

Palliative care is not end-of-life care and is not the same as hospice. Hospice is focused on providing quality care to people in the last months of life who have decided to stop treatments meant to cure them. Palliative care on the other hand can be provided from the time of diagnosis. You can have palliative care at the same time as curative treatment.

Usually a team of experts, including palliative care doctors, nurses and social workers, provides this care. Chaplains, massage therapists, pharmacists, nutritionists and others may also be part of the palliative care team. Working together with your own doctor, the palliative care team provides:

Close communication
Expert management of pain and other symptoms
Help navigating the healthcare system
Guidance with difficult and complex treatment choices
Emotional and spiritual support for you and your family

To learn more about hospice and palliative care visit The National and Hospice and Palliative Care Organization’s website http://www.nhpco.org/templates/1/homepage.cfm.

Jan

Financial help for caregivers

Medical Savings Program

There are resources in each state that can help people with a limited income to pay some or all of their Medicare’s premiums, Medicare deductibles and coinsurance. You must be receiving Medicare in order to qualify. State by State: http://www.medicare.gov/contacts/staticpages/msps.aspx

State Pharmaceutical Assistance Programs

Many major drug manufacturers offer assistance for people enrolled in Medicare Part D. You can find out if the manufacturers of the prescriptions you take offer a Patient Assistance Program by going to:

State by State: http://www.medicare.gov/pharmaceutical-assistance-program/state-programs.aspx

Social Security

If you have limited income, resources and have Medicare, you may qualify for extra help paying for your prescription drugs. You could pay between $1-$5 for each drug. To see if you qualify you can call 1-800-772-1213 TTY users should call 1-800-325-0778

or visit their website http://www.socialsecurity.gov/.

National and Local Charitable Programs

Benefits Check Up was created by the National Council on Aging (NCOA). It is free, easy to use and will help older Americans identify their eligibility for a wide range of benefit programs such as Social Security, Medicaid, Food Stamps, Weatherization, in-home services, pharmacy programs and other state run programs. http://www.benefitscheckup.org/

Medicare.gov https://www.medicare.gov/Library/ExternalSiteRedirector.asp?Language=English&URLPath=http://www.govbenefits.gov/govbenefits_en.portal

Medicaid

Medicaid is a state administered program available to certain low-income individuals and families. Each state sets its own guidelines regarding Medicaid eligibility and services, but in general, people who match one of these descriptions may be eligible:

Aged (65 years old or older), blind, or disabled and have limited income and resources
Terminally ill and want to get hospice services
Aged, blind, or disabled; live in a nursing home; and have limited income and resources
Aged, blind, or disabled and need nursing home care, but can stay at home with special community care services
Eligible for Medicare and have limited income and resources
The parent or guardian of a child who is 18 years old or younger and your family’s income is limited, or if your child is sick enough to need nursing home care, but could stay home with good quality care at home
Facing very high medical bills, which you cannot pay (and you are pregnant, under age 18 or over age 65, blind, or disabled)

Even if you are not sure whether you qualify, if you or someone in your family needs health care, you should apply for Medicaid and have a qualified caseworker in your state evaluate your financial situation.

Contact Information for State Medicaid Offices

http://www.cms.hhs.gov/apps/contacts/

https://www.medicare.gov/caregivers/get_financial_help.asp

Jan

Asperger’s Syndrome in the older adults

Asperger syndrome or Asperger’s syndrome is an autism spectrum disorder that is characterized by significant difficulties in social interaction, along with restricted and repetitive patterns of behavior and interests. It differs from other autism spectrum disorders by its relative preservation of linguistic andcognitive development. Although not required for diagnosis, physical clumsiness and atypical use of language are frequently reported. It is still unknown as to what causes autism. Asperger’s also often runs in families and older adults may recognize symptoms after a younger family member is diagnosed.

There has been a lot reported and written about Asperger’s in children and young adults but little has been written about Asperger’s in older adults. Older adults most likely suffered in silence and were thought to be odd or dull witted. Of course, nothing is further from the truth. Social skills seem to be the challenge but intellect is not. People with Asperger’s love repetition, computers and often grasp technical information quite easily.

Many older people with Asperger’s syndrome most likely learned to cope with their challenges, finished high school, attended college, found employment, got married and had children. Diagnosis in older adults can be difficult because there is no single tool for Asperger’s syndrome that is universally recognized.

Asperger’s syndrome symptoms include:

Engaging in one-sided, long-winded conversations, without noticing if the listener is listening or trying to change the subject
Displaying unusual nonverbal communication, such as lack of eye contact, few facial expressions, or awkward body postures and gestures
Showing an intense obsession with one or two specific, narrow subjects, such as baseball statistics, train schedules, weather or snakes
Appearing not to understand, empathize with or be sensitive to others’ feelings
Having a hard time “reading” other people or understanding humor
Speaking in a voice that is monotonous, rigid or unusually fast
Moving clumsily, with poor coordination

Many people may find a diagnosis helpful but often it can often be met with resistance. Even if the person doesn’t want to change their behavior it can be comforting for the family to understand the reasons for behaviors and attitudes.

Talk with the primary health care providers, care givers, other family members and the person themselve to find out if you should pursue the issue further. There are many resources available to help you and the person with Asperger’s cope with issues that arise.

http://www.cdc.gov/ncbddd/autism/facts.html

http://www.autism-society.org/site/PageServer

State resources: http://www.autism-society.org/site/PageServer?pagename=stateresources

Jan

3 new rules for flexible spending accounts in 2011

Each fall key decisions need to be made concerning how much to contribute to next year’s account flexible spending account. The new health-reform law may affect your flexible spending account during this year’s open-enrollment period. If you are a family caregiver that is being relied on to remain healthy and able to work, then you may want to be aware to the changes in the new regulations.

What is a flexible spending account?

FSAs are tax-free funds that can help pay out of pocket expenses during the year. Money is contributed to a a payroll-based savings account and escape federal taxes and Social Security taxes. There are cut off dates to pay attention to in making the decision of what to do with 2010 funds and how much to put in for 2011. Most employers use the cut off date of March 15, 2011 but some still use December 31st so check with your employer to verify the deadline. Funds not used can not be rolled over; use it or lose it.

Changes in 2011

New rules for adult children’s expenses

Includes any child who is younger than 27 at the end of the year, even if they do not live at home and are not claimed as a dependent. FSAs have allowed using the money for any dependent child’s medical expenses (but not to pay health care premiums) very liberally over the years. This new rule expands the definition of a dependent.

No more non-prescription drugs

In 2011, you will no longer be able to use FSA funds for non-prescription drugs (expect insulin). If you regularly use non-prescription drugs, ask your doctor for a prescription. Medications could include, pain relievers, allergy medications, cough and cold medicines and anti-fungals. You will need to submit a prescription along with the receipt listing the Rx number in order to be reimbursed. If you attempt to bend the rules and buy non-qualifying medical supplies, the amount will be included in your gross income and subject to an additional 20%.

Lower FSA limits in the future

Limits are not changing in 2011, contributions up to $3,000 or $4,000 may be allowed by many employers. The maximum limit with change to $2,500 in 2013. If your employer allows a grace period until March 15 of the following year to use up the previous year, there may be an opportunity to double up available funds by using money left over from the previous year combined with the current FSA allocation.

Ask your employer for information concerning the new changes and for instructions about how to use your flexible spending account. Make sure you take note of the deadline in order to take advantage of this opportunity. It’s a lot easier to have the money there already rather than trying to find it later.

Jan

Men as caregivers

Caregivers come in all shapes and sizes and in both genders. The average caregiver is a woman, married and working outside the home. But what happens when a wife, daughter or mother is diagnosed with a grave illness and the man becomes the primary caregiver? Many middle age and older men in the United States have become the primary caregivers for one or more of their disabled elderly parents, a spouse or other loved one. .

“Whether an ill relative has been diagnosed with Alzheimer’s disease, Parkinson’s disease, multiple sclerosis, Lou Gehrig’s disease, or a stroke, male caregivers often find their new role to be daunting and all-consuming,” reports the non-profit Menstuff® in a 14-page report on its website.

Females are still perceived as the primary family nurturer or caregiver but with many women working outside the home now more men find themselves having to pitch in when necessary to help with day-to-day tasks that an ill loved one need assistance with such as bathing, eating, managing medications, transportation and toileting.

All caregivers need to focus on the positive aspects of caregiving so that they can find the task and commitment less challenging. Many men described the companionship a most positive benefit aspect of their caregiving.

Male caregivers need to focus on maintaining their own health. Men should see their own physicians on a regular basis, maintain a healthy diet and establish a regular exercise routine. When male caregivers do focus on maintaining their health, they are better able to equip themselves with the skills necessary to handle the care situations and needs. It is true that men seek medical help less often than women and sometimes wait until it is absolutely necessary so symptoms may go unnoticed for a long period of time. They may be unfamiliar with dealing with social service agencies, and are often uncomfortable asking for help.

All caregivers can learn about the many social, health and human services available in the community for themselves as well as the patient, according to the National Association of Area Agencies on Aging. An AdvantAge survey reported that 35 percent of men age 65-plus was unaware of most services available locally.

Jan

6 Blog posts worth revisiting in 2011

Senior maltreatment- what it is and what you can do to prevent it

It is difficult for most of us to believe that anyone would abuse someone who is vulnerable but for many reasons it does happen. The stresses of everyday life make otherwise normal acting people act irrationally. It is not easy to be a caregiver and those without the proper support and guidance can become an abuser of one of the most vulnerable populations.

For more information: http://www.actikare.com/890/26/

Alzheimer’s and the Safe Return Program

MedicAlert and the Alzheimer’s Association developed the Safe Return program that is a nationwide. Persons in different stages of dementia wander. They may be looking for something or have a place that they want to visit then often get lost.

For more information: http://www.actikare.com/1018/23/

Carbon monoxide, the silent killer

As winter approaches and we button up our houses, we need to be aware of the dangers of carbon monoxide poisoning. Heating fuels are still high and for those who find themselves in a situation where they need to rely on portable generators when the power goes out or attempt to heat themselves with their oven here is a word of caution.

For more information: http://www.actikare.com/1477/17/

Winter warmth and safety

For those who live in the colder climates and are on a limited income, winter can be a tough time of the year. Heating prices have risen and for those living in older homes it can be difficult. Not only is being without heat uncomfortable but it can lead to sickness and even death. There is help out there. Find out about financial energy assistance programs by finding the Area Agency on Aging that serves your community by calling 800-677-1116 or going to http://www.eldercare.gov Eldercare Locator.

For more information: http://www.actikare.com/1787/10/

Could 2-1-1 Information and Referral help you?

2-1-1 provides free and confidential information and referral. When you call 2-1-1, a live person who is trained will answer and help you find the resources that you need. Many emergency planning systems count 2-1-1 as a partner in their Incident Command System structure and share the most current information during a crisis or disaster could 2-1-1 Information & Referral help you?

For more information: http://www.actikare.com/1316/26/

Scam Alert! Medicare Bait and Hook

In the latest Medicare scam fraudsters attempt to bait unsuspecting diabetes patients with (bait) free diabetes equipment. What they are attempting to do is get your (hook) Medicare number which is the same as your Social Security number.

For more information: http://www.actikare.com/1279/12/