High Copying Charges Block Poor From Their Medical Records

Aspect of Need Addressed: Financial, Medical, Legal

A bill came the other day to my disabled son. It was from HealthPoint in Atlanta, GA. It was a photocopying charge of $89.95, for copies of his medical records from a recent hospitalization.

$89.95 for 85 pages of copied records...

Such high copying charges for medical records requested by those disabled on SSI and SSD effectivey constitutes a barrier to their freedom of medical information. The psychiatrically disabled are entitled to have copies of their medical records to see what happened to them in hospital. But it seems that these high rates are sanctioned by the Attorney General's office of the State of New Jersey. In other words, the State government's sanction of these rates is actually hindering those who most need these records, but cannot afford to pay such high fees.

A while back he was hospitalized at Princeton Behaviorial Health for 10 days in a Level 4 care facility, which is not an uncommon situation for people with psychiatric disabilities. Hospitalization is part of life. Of course the goal is to reduce hospitalizations. But psychiatrically disabled people just wind up hospitalized more than other folks.

Because the hospitalization was to care for his psychiatric disability, afterwards he requested copies of his medical records. This was important to check exactly what treatment he received while there. In particular, he wanted to know what medications he was administered, what observations the nurses recorded, what recommendations the doctors ordered--and, indeed, for what diagnosis he was treated. This is a very prudent and sensible thing to do. All psychiatric patients should insist on copious records of their treatment. It should be their right.

So he wrote to Princeton Hospital, which cared for him, asking for his records. Princeton Hospital outsourced the request to HealthPort, a health information records management company. Some time later the sheaf of papers arrived, followed by a copying bill. HealthPort charges $1.00 per page for copying.

My son, on SSI and SSD, and receives an income of $695 a month in total. He barely meets all his daily living expenses on this meager amount. HealthPort's bill for $89.95 is to him an economic earthquake. As his financial representative, I called HealthPort to learn why this was so expensive.

A nice man answered the phone. He told me that HealthPort's rates are "regulated" individually by each state in which it has business. In New Jersey, they are set by the State of New Jersey's Attorney General's office. I called the AG's office, was directed to its "Citizen's Services and Relations" line, and then to a recording, on which I left a request to be called back.

Let's see whether the AG's office responds...

New "Lower Mode" Medical Transport

Aspect of Need Addressed: Transportational

For the psychiatrically disabled on Medicaid who live in Hunterdon, Mercer, Morris and Salem Counties in New Jersey and who do not drive, transport service is available from the State of New Jersey by which they can get to and from their doctor appointment. The service provider is Logisiticare, a large corporate outfit in Atlanta, GA.

Bookings for this door-to-door service can be made up to 30 days (but not less than two business days) in advance of an appointment. Each time one makes an appointment, one will be asked for the appointment address details and for his or her NJ Medicaid number. (To see the press release about Logisiticare's contract with the State of New Jersey, click here.)

This is another benefit available to those who are on Medicaid, underscoring for the psychiatrically disabled the importance of having their conditions properly and sufficiently diagnosed to qualify for a declaration of disability from the Social Security Administration, which then can authorize payment of Supplemental Support Income, or SSI. SSI in effect becomes a ticket to several disability benefits such as Medicaid, which can then open the door to other benefits, such as non-emergency medical transport services like Logisiticare.

NAMI National Convention

Aspect of Need: Political, Educational

Now in the fourth year of my psychodyssey, I have evolved from angst and agitation to action. This happens to many who get caught in the maelstrom of mental illness. When you get past the anger, and then the grief, eventually you get to action. So it is that I find myself here in Washington, DC, attending for the first time the national convention of the National Alliance on Mental Illness (NAMI).

It is a big affair, taking over the Washington Hilton Hotel. It has drawn consumers and family members from Alaska to Alabama, from Maine to New Mexico, from South Carolina to California. To see so many other Americans who are navigating as best they cay the storm of the maelstrom is very fortifying. I am not alone.

As a NAMI trained local Family to Family Psychoeducation course teacher, I've spent most of the conference so far attending events relating education. These have involved NAMI's Director of Education, Dr. Joyce Burland, the author of and force behind the acclaimed Family to Family Psychoeducation Course. An elegant, articulate and extraordinary empathetic lady, Dr. Burland has created what is considered one of the most effective evidence-based practices in the movement. By her pioneering work she has also given birth to a movement in its own right--an army of family peer educators who provide incredible relief, solace and information.

NAMI Family to Family, although a course to educate adults, is not an adult education course in the typical sense. In normal circumstances the pedagogy of adults involves motivated, focused, ready adult students. In NAMI's Family to Family, so much is different, because the students are traumatized. They are in shock and despair over what has befallen them. They are emotional bruised and battered. They are depressed, desperate, emotionally wounded. The Family to Family Course presents them with reams of information, but many cannot absorb it in their wounded condition.

Traditional education approaches do not work for them. The course pedagogy indeed is not to point. Just to be with others in the maelstrom, even to review information that itself can also be traumatizing in reminding them of the suffering they wish they could avoid... that is the point, and the value, and the power of the NAMI Family to Family Course experience. I know this now from the two courses that I have taught. I was much fortified and uplifted to be present here with all the other dedicated F2F teachers who know exactly what I do, and who play such important roles in stabilizing families.

Yesterday was education day. Today is legislation day. The convention delegates head en masse to Capitol Hill shortly to advocate for several major mental health initiatives. More about these later. All's well here.