Social Security identifies 200 serious health conditions that receive Compassionate Allowances when people apply for Social Security disability benefits.    The Compassionate Allowances program fast-tracks disability decisions to ensure that Americans with the most serious disabilities receive their benefit decisions within days instead of months – or years.  These conditions primarily include certain cancers, adult brain disorders, and a number of rare disorders that affect children.

By definition, these conditions are so severe that Social Security does not need to fully develop the applicant’s work history to make a decision.  As a result, Social Security eliminated this part of the application process for people who have a condition on the list.

The full list of diseases and conditions that get fast-track disability decisions can be found here: http://www.socialsecurity.gov/compassionateallowances/conditions.htm

This is good news for people who have been newly diagnosed with one of the 200 seriously illnesses on the list. The bad news is that most of these people will have to wait 24 months before they get Medicare. In the meantime, if they have lost their health insurance because they can’t work, they are out of luck.  They could use COBRA for 18 months (or more) – if they can afford the high price that comes with paying the full cost of their employer health insurance.

When their COBRA runs out, they could take advantage the Health Insurance Portability and Accountability Act (HIPAA) which says people who have had health insurance without a break must be provided one or two coverage options by every health insurance company. This sounds awesome except that insurance companies are allowed to charge these people outrageous premiums. Insurance companies take the highest premium for the person’s age and triple it. The person with a pre-existing condition can take it or leave it.  Anyone above 50 years old will likely pay $1,000, $1,500, or more per month if they take a HIPAA policy.  This is very bad news for people who are too sick to work and cannot afford such outrageous premiums.

Of course, all this changes one year from now – and that is good news.

Not everyone on Medicare is over 65. Since 1972, Medicare has provided health insurance to non-elderly adults with permanent disabilities who have received Social Security Disability Insurance (SSDI) payments for at least twenty-four months.

A Kaiser Family Foundation study surveyed nearly 2,300 Medicare beneficiaries between the ages of 18 and 64 and found that they face many challenges as they try to live on very limited income.  Most people I have met who are getting SSDI live on less than $1,700 per month – and many live on much less.

From the Kaiser report:

Compared to Medicare beneficiaries who are over 65, a larger share of non-elderly disabled beneficiaries are non-white, in fair or poor health, and have low incomes and fewer years of education.

Half of the non-elderly disabled beneficiaries reported having five or more chronic conditions. About 25% of people over 65 have chronic health conditions.

Non-elderly disabled beneficiaries were more likely than the elderly to report having both physical and mental health conditions.

Nearly one in four non-elderly disabled beneficiaries lacks supplemental coverage — twice the proportion in the elderly group.

Medicaid is the primary source of supplemental coverage for non-elderly disabled beneficiaries. This finding can be explained by the greater share of non-elderly disabled beneficiaries who have incomes low enough to qualify them for Medicaid.  Note:  In Arizona people qualify for Medicaid (AHCCCS) if their income is less than $920 per month and they meet certain asset limits.

Just 6 % of Medicare beneficiaries overall reported having difficulty finding a doctor who accepts Medicare. However, three times as many non-elderly disabled  reported this problem.

Compared to less than 20% of the elderly, roughly half of non-elderly disabled Medicare beneficiaries reported problems paying for health care services, and put off or did not get care because of cost concerns.

More than half of non-elderly disabled beneficiaries who delayed or did not get care due to costs said that going without it resulted in a significant amount of pain, compared to 26% of the elderly.

Before a person on Social Security Disability Insurance (SSDI) can enroll in Medicare, there is a 24 month waiting period.  This waiting period usually begins on the date the person first applied for disability benefits.  As the approval process can take years, with applicants being turned down multiple times, I have met people whose Medicare coverage began as soon as they got their SSDI approval.

From the Kaiser report:

Prior to getting Medicare coverage, non-elderly adults with disabilities who lack employer-sponsored health insurance or Medicaid are likely to have great difficulty finding affordable health insurance in the current individual market. The waiting period for Medicare poses a potentially major access barrier to health care for uninsured disabled adults who—by definition—have serious, preexisting conditions that require ongoing medical attention.

The report speaks briefly about Medicare Advantage and says non-elderly Medicare beneficiaries have a difficult time with co-pays that are part of Medicare Advantage plans.

This is to be expected when a person who lives on $1,500 per month has to pay $40 per physical therapy session and is prescribed 3 sessions per week for 3 weeks.  $40 x 3 = $120 x 3= $360.  This person is probably going to forego the physical therapy, which can lead to a worsening condition. And if this person ends up in the hospital for a week, he will have a $1,400 (or more) co-pay.  Many people on limited incomes don’t have this kind of money in their bank account.

The study looked at people under 65 who are enrolled in Medicare and struggling to live on very limited incomes.  The survey results would be similar if they had talked to people over 65 who are living on their Social Security and have no other income or savings.  People who qualify for AHCCCS (Medicaid) are taken care of and have no medical co-pays.

I think there should be Medicare Advantage plans that would serve people who live on more than $920 but less than $1,500 per month for an individual or $2,300 for a couple.  (Well, there is one in Tucson for people with less than $1,220 per month or $1,600 for a couple). Medicare Advantage co-pays for doctor visits and hospital stays keep going up and many seniors I work with just can’t afford them.