Long-Term Care & HCBS Internet Information

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.

New Spin on Assistive Devices

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?

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!