Promoting Independence & Dignity -- Living with Chronic Conditions or Disability

Is Government Finally Getting It?

2009-02-08T13:07:00.000-08:00

New stuff is happening in the health care, senior services and disability/independence policy world. Here are some recent happenings:

President Obama has reauthorized the Children's Health Insurance Program, expanding access to health care to an additional 4 million children. http://www.disabilityinfo.gov/digov-public/public/DisplayPage.do?parentFolderId=138

"Mind-Body Medicine Practices in Complementary and Alternative Medicine" has been added to Research Results for the Public, a collection of fact sheets for National Institutes of Health (NIH). To view these updates, please go to http://www.nih.gov/about/researchresultsforthepublic/index.htm.

"U.S. Department of Health & Human Services" Date: Fri, 30 Jan 2009 08:12:04 -0600 (CST)Subject: Caregivers' activities Thu, 29 Jan 2009 23:01:00 -0600
Being an active caregiver for someone can wear a person down physically. But a study indicates that being a physically active caregiver – taking time for exercise, for instance – can offset some of the toll.

Long-Term Care & HCBS Internet Information

2008-05-17T07:47:00.000-07:00

Today I'm writing about something I mentioned in another POST--that information on the internet about long-term care and home and community-based services tends to be unavailable, overly technical, or geared toward financial risk planning tools for spouses and children. A fairly new example of this is LIFE FOUNDATION's Website at http://www.lifehappens.org/ Although I didn't read every word, it is a lively and inviting website with real-life stories and calculators to assess a person's need for disability, long-term care and life insurance. I was particularly interested in what they call the "Human Life Value" calculator. The descriptive language was clear about saying it represented ONLY the financial impact of disability or death on a person's spouse or children...in other words insuring against loss of income. Again, I think the website was engaging but something rubs me the wrong way with calling the tool a "Human Life Value" calculator. They may want to re-evaluate that to maybe "Income Risk" or some other more concrete description of what is being insured. Another suggestion is for these financial vehicle sales sites to more actively link to social service and medical information that more completely educates about the multi-layers of impact that chronic illness, disability, trauma or death have on a family. These sites, however tactful and well designed they are, are sill selling financial planning tools and insurance policies. Insurance sales has been by default, the family's nearest counselor PRIOR to a major life event. It's time to give consumers a more accurate and complete information about the multi-dimensional view of what happens when there is a major life event and when a family member needs medical, social AND financial help. Granted, these scenarios almost defy any attempt at generalizing one story's lessons to another person's need. That being said, people need to share their stories not so they become sales tools for insurance agents, but to educate other consumers how to put together the whole package: access to health care, a team of home and community-based service providers (home health, therapies, training, labs, etc.), social supports (maintaining relationships with family and friends), psychological (reconciling with the need for help from others), spiritual (remaining connected with belief systems), housing (change or maintain residence in light of needs and finances, transportation (drive or mass transit options based on needs), education (need for retraining or refreshing skills), arts, culture and hobbies (to have an interest beyond oneself), communications (depends on impact to vision, hearing, etc) and all the unique features of maintaining the highest level of function and independence possible in light of disability or death of a family member. Insuring against financial risk is only one piece of a multi-dimensional picture of "Human Life Value." Addressing this complex picture for consumers is what this BLOG is about.

Please note that this is general commentary and not a grievance about the one site that is mentioned in this BLOG. The named site is inviting and language seems to describe accurately the purpose of educating about financial risk of disability and death to the prime income earner in a family.

CareSpace Blog

2008-05-11T14:29:00.000-07:00

Care givers are diverse. Visit the Blog linked above and enjoy the diversity of their stories.

Gay, Lesbian, Bi-Sexual & Transgender Issues with Aging and Disability

2008-05-08T14:46:00.000-07:00

On a recent vacation in Palm Springs, CA I had the pleasure of meeting with some delightful people involved with a Senior Center that welcoms gay, lesbian, bi-sexual and transgender (GLBT) folks. Being forever naive to life's twists and turns, I presumed incorrectly that aging and disability invoked somewhat universal issues across the board. I neglected to recognize that as people age and are disabled, there is still stereo-typing and ignorance to deal with in addition to seeking the supportive services a person needs. One concept that helped to open my eyes is the fact that while a person's circle of informal supports often sets the pace for receiving services in the community as we age, GLBT folks often have had to piece together that informal network over the years due to the sad fact that biological families have not accepted who they are and family ties have been strained or broken. A GLBT friendly senior center takes on new and multi-dimensional importance. GLBT senior housing becomes even more important to create the warm and welcoming home...a place to just "BE" that many people take for granted. Somehow living with disability or aging with limitations hits us over the head to appreciate the small things in life, like a hug, a wonderful meal with friends, expressing love and all the things that characterize a home. Why should anyone have to censor joy, pleasure of life and love especially in the senior years?

New Spin on Assistive Devices

2008-05-04T14:34:00.000-07:00

I'm in Palm Springs as I write this post. One of my theories about those of us who survived the psychedelic 60s to reach our chronological 60s is that we definitely are going to put a new face on aging and with that, a new face on getting help when we need it...That is once we admit we need help. Palm Springs, being the mecca for snowbirds, golfers and the evening martini set, offers some unique examples of making what used to be hospital hardware into boutique items. For example, there is a shop that offers assistive devices but instead of portraying their customers as frail and needy, the very name of the shop is called "Yes I can!" And my personal favorite is a hearing aid store called "HUH?" Let's have more of that please! Bringing humor and positive spin to aging and disability. I can't help but wonder what new entrepreneur opportunities are out there in the assistive device world...Let your creative juices flow...post your ideas.

Planning Service Providers...What's a Wife To Do?

2008-04-25T15:29:00.000-07:00

Ok, my last post left even me frustrated with its lack of specificity and helpful tips about planning services and supports at home. Today I reflect back on a visit I made with other state bureaucrats to some folks who were receiving services at home chosing independent living over living in a care facility. The folks we spoke to had spinal injuries, gun shot wounds, or other conditions which resulted in limited or no uses of arms and/or legs. I remember talking with a married couple who were obviously in love and happy in their life together. The husband was an engaging person who was very tolerant of our questions and eager to enlighten policy makers. I'm not sure who in our group asked the question, but I remember his answer to the question about how his wife helped in scheduling, training and managing service providers. His injury was a result of a ski accident as I remember; or maybe it was an auto accident. Anyhow, his injury was high level spinal trauma; he had no use of arms or legs. Many of us assumed 24/7 revolving door of service providers. Those of us with limited first hand knowledge assumed his wife handled many details of arranging care. WRONG! He was very gracious and patient as he explained that his relationship with his wife was no different than in other marriages--family stuff, money stuff, shopping, school/work, etc....I don't remember all the details. I do remember his firmness in describing his commitment to his marriage (which are tough waters to navigate anyway) and his love of his wife. His saw his relationship with his service staff as his responsibility and they had made an agreement that he would handle all the details; hiring, firing, training, scheduling, etc. He didn't want day-to-day discussion with his wife to be focused on his need for assistance. As much as possible, this couple chose to work at not allowing the disability and his care needs to come between them, preventing a richer and healthier relationship. They didn't want their marriage to be disabled. I will never forget that couple!

Consumer Information About Long-Term Care

2008-04-23T17:43:00.000-07:00

In 1986 I made a career change (life happens!) from education to community organization and specifically, senior services. I wandered unaware into the world of long-term care facilities and supportive community services for seniors; meal programs, senior companions, etc. It wasn't long until I began asking all the questions that families ask when they are thrust into the long-term care services; how can I (or my loved one) stay at home and get services? what happened that send a person to a nursing facility? Because I was trained as a teacher, I have spent over 20 years trying to figure out what information would best prepare consumers. Have I discovered the magic curriculla that can help consumers? Not hardly. I've spent the 20+ years learning the shape-shifting complexity of declining function, dementia, need for services, high costs, government bureaucracy, health care paperwork and family dynamics all come together to create the perfect family storm. One thing stands out among my thoughts that can best prepare for that storm. And that is Don't Go It Alone and Ask Questions. Disappointing as that may be, it's the best I can do. Consumers and families and as I near 65, I understand that people don't like to admit they need help, let alone talk about Frank's "autumn of my life." I continue to come back to concepts of community and family, understanding that some unfortunately, have neither and have never had either. Long-term care, however, is the great equalizer. Chronic care and disability happens. It's a journey and the best information a consumer could be given is that others have been down that path and the community is out there to help. Reach out!

When Leaving the Hospital---Don't Forget the Doctor's Order for Home Health!!

2008-04-18T15:46:00.001-07:00

If there's one bit of information I'd pass along to seniors and people living with disabilities is ALWAYS ALWAYS ask for a doctor's order for home health services!!! when leaving the hospital. That at least opens the discussion. If you haven't seen the doctor, have the nurse put a note in your chart (or your loved one's chart) DO NOT DISCHARGE WITHOUT MD ORDER FOR HOME HEALTH AGENCY SERVICES. Whether you need services at home for a short time or for the long-term, home health agencies can help you and educate you on how to set up services that help with activities of daily living--showering, eating, toileting, etc. or nursing services or nutrition education or social work. Even if it's only for a short time and even if you have to pay, it's worth it! You can then figure out what you are dealing with, what insurance will cover and how long you'll need help. Too many discharges from hospitals happen at 4:00 on Friday afternoon in a rush without time to absorb information about your conditions are all about, how long they are likely tol last, and what assistance might help and what to do in an emergency. Ask for the information you need!! Don't go home without a doctor's written order for home health! Or at least consider home health alternative or assisted living alternative to a nursing facility. You have a right to make an informed decision.

Compassionate & Neutral Info About Long-Term Care Scarce

2008-04-16T10:05:00.000-07:00

Much of what you can find on the internet is info about long-term care from attorneys and insurance agents. However hepful that is when you want to buy LTC insurance and/or set up a trust, it loads the discussion with a pressure not always helpful in a situation when you are trying to figure out how to keep yourself or someone you love comfortable and safe at home for as long as possible. LTC services for any one person are unique, requiring careful and neutral discussions about quality of life, daily activities and how you feel about receiving help from others. Too much help at home is overbearing and expensive and caregivers take over the home that is uniquely and peacefully yours. Too little can leave you unsafe; yet you may desire to accept risk. These are delicate and very private discussions; not to be driven solely financial interests. Finances are a large factor in the discussion. But all the more reason to find a neutral party to help sort it all out. Social workers are excellent sources for this sorting out and if you find a geriatrician or gerontologist, you hit the pay dirt of the long-term care process. ASK EVERY QUESTION YOU CAN THINK OF so that the days receiving help from others will be as rich as the life you've had up until now.

Should You Give Up Your Life to Care for An Elderly Parent or Relative?

2008-04-14T19:15:00.000-07:00

Not an easy question and no easy answers. Lots of people struggle with this every day. Some find they can arrange for services and supports and still carry on with their own daily life without much disruptions. On the other hand, many take leave from a career or family to provide care at home instead of admit an elderly relative or spouse to a nursing facility. What are the sacrifices and what are the rewards? When do you draw the line and step back into your life? What are the considerations that helped you decide on a good plan.....Or what were the events that made it clear the price was too high?

If Not Nursing Home, What Should Long-Term Care Look Like??

2008-04-14T19:08:00.000-07:00

States, consumers, families and advocates alike say they would avoid going to a nursing home. But if you or your loved one needs help with chronic conditions and daily activities, what does that care look like and who should pay for it? How many hours? Who should help? How much should it cost?

Challenges to Home-Based LTC

2008-04-14T17:13:00.000-07:00

A number of state and federal initiatives are in progress expanding opportunities to build home and community alternatives to costly nursing facility stays. I invite providers, consumers, family caregivers, personal care givers and anyone else to write about the challenges -- success too, in getting services at home and in the workplace. Focus of this blog is California.