Paying for Health Care

The early average age of onset of FTD may result in significant loss of income and health insurance. The following resources can provide some assistance.

Social Security

In addition to providing benefits to retired persons who have reached the age of 62, Social Security also provides disability benefits to persons (i) who are unable to engage in substantial gainful activity (paid work), (ii) whose inability to work is the result of a medically documented physical or mental impairment, and (iii) if the impairment will last at least 12 months or is expected to result in death. In October 2008, the inclusion of FTD in the Social Security Compassionate Allowances program ensures that someone with a properly documented diagnosis of FTD can expect an expedited review for approval for Social Security disability benefits.  In February 2010, Primary Progressive Aphasia was added to Compassionate Allowances, as were Corticobasal Degeneration and Progressive Supranuclear Palsy in October 2011.  Click here for details on the Compassionate Allowances program.

A person typically is eligible for disability benefits if he or she has worked for twenty of the forty calendar quarters before the disability began.  Once a person qualifies, payments will continue as long as the person is disabled.  When the person reaches retirement age, the disability benefits become retirement benefits.  The amount of benefit payments depends on the person’s age, the amount of money he has earned over his lifetime, and other factors.

Supplemental Security Income

SSI is a federally funded cash assistance program to help persons 65 or older, and disabled persons with limited income and assets, to purchase basic needs such as food, clothing, and housing.  SSI payments are sometimes supplemented with state benefits as well.  A person does not need to have a work history to qualify for this program.  If a person does have an adequate work history, it is possible to qualify for Social Security disability, SSI, and Medicaid benefits at the same time.


Medicare is federally-funded health insurance available to persons 65 and older and certain persons who have been permanently and totally disabled for at least two years. The two-year waiting period begins with the date of Social Security disability determination.  Private insurance companies administer Medicare benefits, and doctors may choose whether or not to accept patients covered by Medicare.  Medicare coverage is limited to certain types of care and does not cover many medical expenses, such as nursing home stays over 100 days.  In addition, some types of care are covered under Medicare Part A, which typically does not require a payment of premiums, and some types of care are covered under Part B, which does require payment of premiums.  Prescription drugs are covered under Part D.  State funds may be available to help pay the cost of co-payments, premiums, and prescription costs.


Under the Consolidated Omnibus Reconciliation Act of 1986 (COBRA), employers with more than 20 employees are typically required to allow persons who lose coverage under the employer’s group health plan (due to loss of employment or other reasons) to remain covered for up to 18 months, though the person may have to pay both the employee and employer share of premiums plus a small administrative fee.  Because there may be a gap between the end of COBRA and the availability of Medicare coverage for disability (24 months from onset of disability), COBRA may sometimes be extended for a total of 29 months.  To ensure continuity of coverage, it is important to file a social security disability claim promptly once a person qualifies.


Medicaid is health insurance for persons with low incomes.  Medicaid is funded by both federal and state governments, but each state administers its own Medicaid plan and has its own requirements and regulations.  Medicaid coverage is broader than Medicare, covering additional services such as long-term care and supportive living facilities, but finding providers who accept Medicaid can be difficult.  Eligibility to receive Medicaid is typically measured by considering your monthly income along with the value of your property, possessions, and savings, including a “look back” to your assets over the past several years.   Individuals may sometimes be advised by a professional advisor to “spend down” their assets so that they become eligible for Medicaid.  In addition, Medicaid allows for certain wealth and income transfers to a spouse or to special trusts for the benefit of a disabled person without affecting eligibility.

Medigap Insurance

Because Medicare often does not cover important types of care, many individuals choose to purchase “medigap” policies from private insurance companies.  Medigap policies may cover types of care not covered by Medicare and may cover Medicare premiums, co-payments, and other costs.

Long-Term Care Insurance

Long-term care insurance can be a good investment for individuals who do not qualify for Medicaid or do not wish to “spend down” their assets in order to qualify for Medicaid.  Typically the premiums for long term care policies are more expensive as the insured individual grows older.  However, the existence of certain medical conditions may exclude a person from coverage or make coverage prohibitively expensive.  Long term care policies differ with respect to the types of care that are covered.

Other Options for Financing Care

A number of other options exist to pay for health care or long term care if insurance plans, government assistance, and savings are insufficient.

“Reverse mortgages” are often used as a tool to provide a homeowner with income out of the value of a home.  The bank pays the homeowner cash and receives the entire home or whatever portion has been paid in cash to the homeowner upon that person’s death.   Numerous other strategies, such as sale-leasebacks, life estates, and charitable remainder trusts, can also be used to turn the value of the home into cash while maintaining residence.

Some life insurance plans allow the policy holder to begin receiving “accelerated benefits” or “living benefits” prior to death to pay for long-term care or other health care.

In addition, viatical companies will sometimes purchase a life insurance policy from a person for cash and become the beneficiary of the policy upon the person’s death.

Joint Checking Accounts

A joint checking account with a caregiver as a signatory allows the caregiver (when properly authorized by a power of attorney) to pay bills on behalf of a loved one.  Both account owners can access all of the funds in the account at any time.  However, a joint account may affect eligibility for Medicaid payments if not managed properly, as all of the assets in the account will be considered to belong to the potential Medicaid recipient.  A joint account “with right of survivorship” allows a surviving account owner to assume full ownership of the account and all remaining funds without submitting the account to probate upon the death of the other owner.  However, it may be difficult to resolve disputes between the account owners in the event of disagreements about the proper management or disposition of the property.  In addition, the creditors of each account owner may have recourse to the jointly owned property to settle obligations of each owner.