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.

New Freedom Commission on Mental Health (2003)

Aspects of Need Addressed: Educational

One great service rendered by the Bush Administration to the Nation was the establishment of the President's New Freedom Commission on Mental Health by Executive Order in 2002. The New Freedom Commission studied all aspects of the state of mental health services delivery in this country. It published a 130 page report which articulates so many of the challenges--and opportunities--within "The System" today.

It is a good document... not a perfect one, but a very good one. It was a detailed summary of all that my son and I have experienced during his odyssey with mental disabililty. It states many things that need to be done. And, oh, so much needs to be done!...

Here are a few notable excerpts on which I would comment:

“After a year of study, and after reviewing research and testimony, the Commission finds that recovery from mental illness is now a real possibility.” (Cover letter to the President)

The recovery focus, rather than the illness focus, is a welcome adaptation. The future of treatment for the mentally disabled MUST be focused on the individual consumer, empowering him or her to participate in and make all the decisions relating to his or her treatment. But I cannot help but cynically note the presence in this sentence of the word "now". Recovery has always been possible. It has not been achieved because of all the impediments we as a society and as invididuals have placed in its way, notably stigma.

"In 1997, the latest year comparable data are available, the United States spent more than $1 trillion on health care, including almost $71 billion on treating mental illnesses. Mental health expenditures are predominantly publicly funded at 57%, compared to 46% of overall health care expenditures. Between 1987 and 1997, mental health spending did not keep pace with general health care because of declines in private health spending under managed care and cutbacks in hospital expenditures..."

Oh, the humanity! The cost of mental illness is high. The funding of mental disability recovery is shrinking. How short-sighted. How tragic.

"Science has shown that having hope plays an integral role in an individual’s recovery."

One of the remarkable conundrums I find in my research on The System is how much reference is paid to "hope" yet how little is made to the role that religion and spirituality can play in recovery. There is, I believe, good evidence to support their helpful effects. At a recent NJ State convention of the National Association of Social Workers, I particularly found this to be the case. We do our loved ones a great disservice if we don't promote certain transcendental concepts. One is that we are all God's children, equal and worthy of innate dignity, even and especially the weakest or afflicted amongst us. Another is that hope in its purest sense comes from God. Man will always fall short and disappoint, corrupted as we mortals are by our avarice, our prejudice and our moral limitations. It was not so long ago in a certain Western country which had smashed traditional religious faith that the mentally disabled were classified as "defectives" and put to death because they were not "useful" to society.

"In partnership with their health care providers, consumers and families will play a larger role..."

It is reassuring to see a government commission state clearly what all desparate families with mentally disabled loved ones have long known themselves from their bitter experiences with The System...

"Of the more than two million adults in the U.S. who have at least one episode of homelessness in a given year, 46% report having had a mental health problem within the previous year."

There seems to be a very high correlation between mentally disabiilty and homelessness.

"A University of Pennsylvania study found that homeless people with mental illnesses who were placed in permanent supportive housing cost the public $16,282 less per person per year compared to their previous costs for mental health, corrections, Medicaid, and public institutions and shelters..."

Doing nothing about it is far more expensive to society.

The whole report takes about an 90 minutes to read. For those of us in the maelstrom, it is worth the time. Download the full report here.

Schizophrenics Anonymous New Brunswick

Aspect of Need Addressed: Social, Educational

In America, they say, there is a support group for everything. Clicking around the UMDNJ website this evening, I found that there is one specifically for individuals with schizophrenia, called, you guessed it, Schizophrenics Anonymous. It was founded in 1985 in Detroit by Joanne Verbanic. Today it is supported by the Schizophrenia and Related Disorders Alliance of America (SARDAA), which, among other things, offers a pretty good resource list. The organization has 150 groups in 31 states and a few other countries.

One of its local groups meets in New Brunswick at a facility apparently attached to the UMDNJ's University Behavioral Health program. The group bills itself as "a confidential SELF-HELP group for persons with schizophrenia or a schizophrenia-related disorder." It meets twice a month on the first and third Tuesdays of each month from 4:00 PM to 5:30 PM at The Self-Help Center - Lower Level, 96 Bayard Street, New Brunswick, NJ. For more information about this group, including a contact telephone number, see: http://ubhc.umdnj.edu/adult/Schizophrenics.htm

NJ Medicaid: Where To Find At Least Some Stuff

Aspect of Need: Medical, Financial

Just for the record...

The place to find more information about NJ Medicaid is at a nondescript website for the NJ Medicaid Management Information System, located here. But, being a very technical website principally for the use of Medicaid providers, when viewing it the common man would hardly know what it is.

The provisions of NJ Medicaid are found deep within the dense New Jersey Administrative Code. The NJAC can be found through the NJMMIS website which directs you to the New Jersey Division of Medical and Human Services site, which directs you to its Medicaid Eligibility and Services Manuals site, which directs you in turn to a Lexis-Nexis site in which, after you agree to terms, you can look at the long, dense, complicated NJ Administrative Code. For example, want to see what NJ Medicaid says about medications? Look up the "Pharmaceuticals Manual" in the NJAC, under Title 10, Chapter 51.

The list of Medicaid providers in NJ is now online here.

Changes in policies and regulations within NJ Medicaid are catalogued in its newsletter. See all the back newsletters here.

Touchdown! Enrollment Achieved

Aspect of Need Addressed: Medical, Financial

Done! Finally!

It was almost like filling out a complicated 1040 tax form. So went my disabled son's the enrollment in a new Medicare Part D prescription drug program. But now he is in a new plan, Medco's Medicare Prescription Plan--Value (PDP).

This process began in early February when my son received notice that his Part D plan provider, Fox Insurance, had been disqualified by Medicare. To meet his transitional needs, Medicare took him out of Fox and placed him in one of Medicare's own Part D plans administered by Humana. There was no apparent effect either on his status or coverage.

But Medicare instructed my son to decide, by April 30, whether to stay in the government plan into which Medicare switched him or decide anew on another private sector plan. For the past four weeks we have been trying to determine the linkages of his coverage in whatever plan between Medicare and Medicaid. We learned only yesterday, and confirmed again today, that NJ Medicaid will indeed cover payment for certain benzodiazepine medications that are excluded from the formularies of the six "bench mark" plans for which he as a "dual eligible" was eligible.

(A big shoutout, by the way, to Ms. Penali Patel, a pharmacist working in Unisys, the NJ Medicaid administrator, which whom I connected today. She was the first within the entire NJ Medicaid system who could crisply, confidently and completely answer all my questions!)

(Kudos also to Medicare's newly updated website. The graphics are better, and the navigability has improved. NJ Medicaid ought to follow suit.)

This was not an easy process by any means. But we got it done. In most cases I don't think psychiatrically disabled individuals would be able to manage this complicated process alone.