Stacey K. Barton, MSW, LCSW

Clinical Social Worker, HDSA Center of Excellence at Washington University School of Medicine, St. Louis, MO


What is Long Term Care Insurance?

Long Term Care (LTC) insurance assists with paying for nursing home, assisted living and in some cases in-home care and home modifications such as wheelchair ramps. 

LTC is extraordinarily expensive.  The average cost of a semi-private room in a nursing home in the United States is $198/day and the average cost of a home health aide is $21/hour (US Department of Health and Human Services, 2011, based on 2009 data).  These numbers are averages.  In the state of Hawaii, a semi-private nursing home will run, on average, $316 per day!  Because most people cannot afford to pay for this on their own, it is important to have an understanding of LTC insurance.

Most people mistakenly believe that Medicare will pay for LTC.  This is only true in acute, short term cases following a hospitalization.  It does not cover the more routine “custodial” care, which is what is typically required for people with HD.  Medicaid does cover long-term care but is only available to those who meet certain income requirements (or become impoverished in the process of paying for LTC).  It also greatly limits your choices of what facilities you can consider and will not in any significant way pay for in-home care or home modifications.

LTC insurance provides you with choice over the providers of your care because for the purpose of paying for care, you are considered a “private pay” consumer.  This allows you to choose who will be your provider of care or services, as long as they are licensed companies.

LTC insurance can be very complex. There are additional riders available to account for inflation, in-home care, and other variables.  You will have choices about the amount of coverage, the elimination period (see below for definitions), and other factors that affect the cost of the premium.  In most cases, you will have to submit to a physical.  There may be exceptions to this, such as if you are purchasing LTC insurance upon starting a new job at a company that offers this benefit.  You can inquire about what the underwriting process entails.  This can be important for those who are gene positive but not yet symptomatic.  It is much better to purchase this insurance before you complete testing and/or diagnosis.

It is important to choose a company with a strong financial standing that will be there in the future if you need to tap into this very expensive care.  Many strong, stable companies have gotten out of the LTC insurance business.  Most are honoring their current policies, but you would hate to pay on a policy for decades only to learn the company has gone bankrupt once you need to file a claim.

As with other types of insurance, it is important once you purchase a policy that you do not let it lapse by missing a payment.  If this happens, you will be subject to reapplying and thus to any preexisting and exclusionary conditions.

How much does LTC insurance cost?

This varies based on your age and the type of benefits you are purchasing.  That said, the average cost across all ages is over $2,200 per year.

I have heard that it can be very difficult to get LTC insurance once you are diagnosed with HD.

This is true.  Keep in mind that the underwriters likely don’t really understand HD, so the distinction between being “gene positive” and “being diagnosed” is probably not clear to them.  The Genetic Information Non-Discrimination Act (GINA) does not apply to LTC insurance so it is legally acceptable for them to deny you based upon your genetic risk, your gene status, or your disease state.  For more information on GINA, please visit the HDSA GINA toolkit, found at www.hdsa.org/gina.

According to the National Association of Insurance Commissioners, “A long-term care insurance policy usually defines a pre-existing condition as one for which you received medical advice or treatment or had symptoms within a certain period before you applied for the policy. Some companies look further back in time than others. Many companies will sell a policy to someone with a pre-existing condition. However, the company may not pay benefits for long-term care related to that condition for a period after the policy goes into effect, usually six months. Some companies have longer pre-existing condition periods or none at all.”

What if I am at-risk and the application asks about a family history of HD? 

You have to be honest on the forms but do not need to give them any more information than they request.  If you are not truthful on the application and this comes out later, this is fraudulent and your benefits could be denied.

I have been hearing something about the “CLASS” program.  What is that?

This is a new, national, voluntary insurance program authorized under the Affordable Care Act.  While it was signed into law in 2010, details about this plan will not be available until late 2012.  It will allow working people to enroll in the plan and pre-existing conditions will not disqualify someone from enrollment.  The plan will cover things such as nursing home and assisted living care, in-home assistance, specialized transportation and assistive technology.

If you would like more information about finding Long Term Care insurance in your area, please contact your local social worker, found here.






LTC Insurance Concepts:

Daily benefit amount: The maximum daily expense the insurance will pay.

Benefit period/Lifetime benefit maximum:  Total amount of time or money that you can receive as benefits.  This is often 2-5 years, but lifetime coverage may be available.

Inflation Protection:  Allows the amount of your benefit to rise with inflation over time.  This is important because of the costs of care are climbing rapidly, but if your benefit amount is static you may see a shortfall between your insurance benefit and the cost of care.

Elimination period: the number of days you have to pay for care before the policy kicks in.





Long Term Care Insurance

By Lisa Kjer, MSW,  HDSA Center of Excellence Social Worker, UC Davis Medical Center, HDSA Northern California Chapter Social Worker

LTC Policies are designed to pay a daily rate for care.  That daily rate can be applied to any of the services below.  The daily rate you receive will depend on the extensiveness of the LTC policy purchased.  Available policies will vary by company and by state.

•           A semi-private room in a nursing home

•           A private room in a nursing home

•           Care in an Assisted Living Facility (for a one-bedroom unit)

•           A Home Health Aide

•           A Homemaker services

•           An Adult Day Health Care Center

Resources for information on LTC Insurance

National Clearinghouse for Long Term Care Information:  http://www.longtermcare.gov

Federal Citizen Information Center Guide to LTC Insurance: http://www.pueblo.gsa.gov/cic_text/health/ltc/guide.htm#cover

National Association of Insurance Commissioners: http://www.naic.org/index_ltc_section.htm

Administration on Aging (Information on CLASS program): http://aoa.gov/AoARoot/CLASS/index.aspx