Passing love on: Families cope with continuing care

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  • Utah Native Farmington, UT
    Sept. 11, 2012 3:34 p.m.

    Luv2organize, a better option would be a Special Needs Trust. As Vern001 pointed out, any assets the person with a disability has precludes him from qualifying for Supplemental Security Income (SSI, through Social Security) and Medicaid. I, too, think the Able Act would be a helpful piece of legislation. Not only is it much more economically wise to assist families in raising their own children with disabilities (or caring for any other family member with a disability) than it is to have them institutionalized, but the environment is also preferable. I realize there are some circumstances that make taking care of such a family member nearly impossible, but I'm so glad we've come so far from the days of automatic institutionalization.

  • Kalindra Salt Lake City, Utah
    Sept. 10, 2012 5:13 p.m.

    @ NeilT: "Financial gurus" will also tell you not to buy life insurance for your kids - which is great advice until one dies and you are not only coping with the loss of a child but also the potential loss of your financial security.

    Life insurance is meant to make sure that if something happens to you, the major financial needs of your spouse and/or children are taken care of - that they have the money to bury you and enough left over that the house gets paid for, or the car, or that your debt is paid off, or that the kids can attend college.

    Financial gurus give advice for "average" situations. There is nothing "average" about having children who will never be able to care for themselves and will rely on you for their financial well-being not only through-out your life, but theirs. In those situations, longer term life insurance - know as whole or universal life - is needed.

    Financial gurus will be the first to tell you to look at your individual situation and not just follow what they say blindly.

  • vern001 Castle Rock, CO
    Sept. 9, 2012 8:51 p.m.

    I have a son with Down syndrome and I too worry about the day when I can no longer care for him. And the recent proposals by Romney/Ryan to cut Medicaid and other services for the disabled while pushing forward tax cuts for the wealthy strike me as very uncharitable. I've read some estimates that caring for a severely disabled child will cost families in the neighborhood of several million dollars over the course of a lifetime. How can one family bear that burden alone? And shouldn't we, as a caring society, want to lighten each other's load?

    On another note, there is an act slowly making its way through Congress, called the Able Act. It would allow parents and family members to set aside money in a tax-advantaged savings account. The money would not preclude individuals from receiving Social Security and Medicaid. Let your congressional representatives know you support this act and want them to do so as well!

  • NeilT Clearfield, UT
    Sept. 9, 2012 2:11 p.m.

    Kalindra I rspectfullly disagree with your advice. Whole life and Universal Life are terrible investments. They are promoted by the insurance industry because they pay high commissions to insurance agents. If you don't believe me ask Dave Ramsey or other financial gurus. Most are against buying it.

    My mother had Parkinsons. I totally relate to the article. Unfortunately our society is embracing a philosophy of rugged individualism and everyone is on their own. Universal health care and caring for the poor and needy are labeled as socialism and big government. In my work as a UTA driver I work with the disabled every day. Many are in desperate situations. Society as a whole has chosen to their ignore plight or just pretend they don't exist. It is heartbreaking to see their situation and wish you could do more to assist.

  • DVD Taylorsville, 00
    Sept. 9, 2012 2:06 p.m.

    @Kalindra, that's very good advice for all of us. Thank you so much for that.

    @ljeppson, a society can be measured by how they treat their most vulnerable, perhaps? The general welfare of society as a whole can be improved by less desperate conditions for all. But it does take some taxation or other revenue raising in order to do these things.

  • Kalindra Salt Lake City, Utah
    Sept. 9, 2012 10:11 a.m.

    @ luv2organize: You stated that you are setting aside money in case you outlive your life insurance policy - from this I take it that you have a term policy (possibly covering the time of the mortgage on your home or some other event)?

    You should speak with a trusted insurance salesperson and see if you can afford a whole life or universal life policy - either of these may be able to help you feel more confident that your child (and surviving spouse should one predecease the other) are provided for.

    My family has looked into these as a way to help care for my sister. There are some affordable plans out there and it relieved a great deal of stress. :)

  • luv2organize Gainesville, VA
    Sept. 9, 2012 7:27 a.m.

    From a money perspective: As a parent of a disabled child I have learned how important it is to have life insurance and a Will & Trust designating someone to manage the money in his behalf should we die before he does. We are also setting money aside for him should we outlive our life insurance policy and die before he does.

  • ljeppson Salt Lake City, UT
    Sept. 8, 2012 11:24 p.m.

    Compared to Finland, Norway, Sweden, and Denmark the United States is a primitive third world country in these matters.

  • Europe Topeno, Finland
    Sept. 8, 2012 10:35 p.m.

    When an unexpected disaster strikes, especially in health issues, a modern society/government is ready and willing to assist the person/family to cope to allow the person/patient the best care needed. Happy to live in a country where those needa are considered and covered. This is a result of several decades of ( non- political) development.

  • davidmpark Salt Lake City, UT
    Sept. 8, 2012 6:45 p.m.

    I am 34 and caring for my wife of 12 years who is 36 and has a lot of disabilities. I do this and also raise our three young children. So far, I only get some help from her side; my side disowned me for not divorcing her. This article is correct; it is very difficult. A person literally sacrifices them self to extend the life of another; and it's an honor and privilege to do it. The biggest difficulty we have is the finances. We tried raising our own food in West Valley due to inadequacies of the public assistance programs, and West Valley City zoning and neighbors forced us to get rid of everything I built to cut down on food and utility costs and forced us back into poverty. I tried explaining that we can't make it without me raising rabbits, chickens, and a large garden, but they didn't care at all. Also, finding a job that can be accommodating to a caretaker is near impossible. Employers and agencies believe it's too risky and that my priorities are skewed. This is an act of love, and it's worth it.

  • Aggielove Cache county, USA
    Sept. 8, 2012 6:40 p.m.

    I have the upmost respect for all the families who love there members no matter what there challenges are.
    Some of the very most Christlike people we have. Period..

  • Nan BW ELder, CO
    Sept. 8, 2012 3:29 p.m.

    This article reminds of the great admiration I have for families who make life as happy and normal for members with special circumstances as possible.. We can lighten their loads by offering to help and being friends with those who can't go about life the way the rest of us can. My best wishes to all who are unable to be independent and all who help them do what they can to care of themselves.

    I'll never forget my neighbor David on Skyview Drive in SLC, who loved Jazz Games and had a job putting info packets into product packaging. He spent hours each day doing this task while his dedicated parents offered encouragement. He lived life fully, and his family helped make that work.