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.

Bingo! (...I think...): The Answer!

Aspect of Need Addressed: Medical, Financial

The question is...

...when required to switch to a new Part D prescription drug plan, can my son maintain access to all the medications he needs within a plan that covers all their costs as to which he is entitled as a "dual eligible" disabled?

The answer is...

Yes... I think...

But the condition to the answer is...

...as long as NJ Medicare continues to pay for benzodiazepines even when they are not listed in Medicare's Part D formulary.

My quest sought to address two issues: access and cost. As to access, we had to assure that my son could get the medications he needed, without exception. As to cost, could we get the access he needs within one of the "benchmark" plans open to "dual eligibles" like my son?

My quest got off on the wrong track, due to my insufficient understanding. Eaerly on I got confused when misunderstanding that "dual eligibles" in New Jersey had only six plans from which to choose. I thought that dual eligibles were restricted only to these six plans. In fact, they can enter any of the 45 plans available in New Jersey. But they would have to pay those amounts above those payments made by NJ Medicaid.

After more research this afternoon, I finally found my answer. It came from a very knowledgeable call center worker at Medicare and from a very helpful local pharmacist at CVS in my home town.

From my Medicare call center friend, I was relieved to learn that my son's access to all his medications could be assured. Some plans may offer to cover such medications as Medicare will not, but charge a premium to cover their cost. (In fact, Aetna offers a very reasonable plan like this. Aetna's formulary includes all the benzodiazepines which my son had listed, but charged a moderate monthly premium of $7.29.)

I was also pleased to learn--not from NJ Medicaid (or from Mercer County Board of Social Services, the NJ SHIP Counselors, or Social Security's Trenton office, all of which I personally visited yesterday), but from my local pharmacist!--how NJ Medicaid really works. NJ Medicaid apparently pays for benzodiazepines as long as they are correctly prescribed and used, no matter what the restrictions in the formularies of the Medicare Part D providers who are the primary insurers. This means that, contrary to my worry, my son can enter a Part D plan in which his benzos are not in the formulary, knowing that NJ Medicare will cover them after payment is rejected by the primary insurer.

Getting to this conclusion has been exceedingly difficult and frustrating. Part of the problem was my misperception of a note in a yellow form letter from Medicare. But more of the problem is due to the very opaque NJ Medicaid system. Nowhere could I find a posted NJ Medicare formulary. Getting through to the NJ Medical Customer Center was also difficult. Even the helper behind the glass at the Social Security office became exasperated with NJ Medicaid. It was she who suggested that the best person for me to call about NJ Medicaid was... my local pharmacist!

To conclude, then, two questions:

1. Will Medicaid get better or worse with Obamacare?

2. How does a psychiatrically impaired individual navigate such a thing as changing Part D prescription drug plans on his own?

Medicaid Drug Coverage: Who Can Answer My Question?

Aspect of Need Addressed: Medical, Financial

I cannot get a definite answer. Will all the medications that my psychiatrically disabled son needs be covered under the new Part D plan he now must enter, since his previous Part D provider has been disqualified by Medicare?

About a month ago, Medicare canceled its contract with the Part D prescription drug contractor, Fox Insurance, which was covering my disabled son's medications. All the medications he needs were on Fox's formulary, so there was no need for concern. Now that Fox is no longer qualified to participate in Medicare, my son must change his Part D prescription drug plan provider.

Working through the Medicare website, he has learned that there are seven so-called "benchmark" Part D plans for which he is eligible. These "benchmark" plans are for those like my son who are on disability and need "extra help" paying for their medication coverage. Those needing extra help, also called "dual eligibles", are eligible for both Medicare AND Medicaid. Medicare pays for 80% of all costs, after certain deductibles. For dual eligibles, NJ Medicaid pays for the 20% co-pays.

Now that he must change his Part D plan, there arises an important issue. None of the seven benchmark plans include on their formularies all the medications he is taking or needs for his various psychiatrically related ailments. This causes me as his father some concern. A mentally ill individual must have access to his medications! What is to be done?

For four weeks I have been trying to find answers. Visits to the NJ SHIP Counselors, experts in Medicare but not Medicaid, have not been fruitful. Calls to the NJ Medical Customer Call Centers, which take the calls for Medicaid, have not been clarifying, either. I'm still nervous that my son might lose access to some of his medications.

Here's where I think we are at the moment...

1. Medicaid is a back up insurance plan for Medicare. In my son's case, whatever Medicare does not pay, Medicaid will.

2. Drug formularies are set by the Medicare Part D drug plan providers in accordance with Medicare, not Medicaid rules. In other words, drug formularies are driven by Medicare. There is apparently no special Medicaid drug formulary.

3. Medicaid does, however, sometimes pay for medications that Medicare will not cover. Such is true for certain benzodiazepines. Although they are effective medications for certain types of anxiety, the "benzos" are problematic because they are also addictive and sometimes abused. Medicare does not cover them. But Medicaid sometimes does, as long as they are correctly prescribed and controlled.

Stay tuned...

Ticket to Work: Ticket to Nowhere?

Aspect of Need Addressed: Occupational

A call came the other day for my disabled son. It was from a firm called MAXIMUS Ticket to Work, the agency contracted by the Social Security Administration to run its "Ticket to Work" program. Angela, a "Ticket Services Coordinator", had left a message for my son to call back.

The call was to see if my son had his Ticket to Work and whether he needed more assistance. When I called back on his behalf, a girl named Helen answered the phone. Helen clearly didn't know too much about the program. Most of her answers she read from a script. She frequently put me on hold to ask for more information from elsewhere. The outreach was appreciated, but not very effective.

In March, Angela had also called my son about Ticket to Work. At that time she sent him its list of "Employment Networks and State Vocational Rehabilitation Agencies which have agreed to serve your area". The list has the names of 64 agencies. Some of duplicates. All have an associated letter designation, A, B, and C. The As are those "in your local area". The Bs are those in your state. The Cs are national organizations that can serve the Ticket to Work ticket holder. But an inspection of the list shows that several firms designated "A" are not in our local area. Indeed, they are not even in our state. Among the As are firms in Racine, WI; Madison, WI; Brooklyn, NY.

As the father of a mentally disabled individual, I get quite annoyed with this kind of government inefficiency. Here's a massive program designed to help the disabled get back to work. Yet the administration of the program is complicated to say the least. A visit to the program's website, http://www.yourtickettowork.com/, will confirm this.

To get a feeling of what "Employment Networks" are and how they get to be part of the program, I clicked into the Employment Networks area. There I found a thicket of hard to interpret explanations and a blizzard of words. This program, I fear, is one of the large well-meaning but ineffectual programs that is wasting a ton of Federal money. It just does not seem well managed. It seems particularly difficult for a mentally ill loved one to navigate. My son's previous experience with this program to date has been sub par.

Big News! Feds Postpone 21% Price Cut For Medicare Doctors!

Aspect of Need Addressed: Medical

I received an update from the National Association of Social Workers today. It reports that President Obama has recently signed the "Continuing Extension Act of 2010." This new law, retroactive to April 1, extends through May 31 (only) the "zero percent update" of the Medicare Physician Fee Schedule. Without this legislation, the fees of Medicare providers would have been cut by21%!

This makes me nervous. The debate around the new health care recently passed talked a lot about some $500 million out of Medicare expenses. The 21% cut was factored into the economics of the bill. This increase immediately busts the cost savings that were predicted in the debate.

Everyone on Medicare, especially our disabled loved ones, should be alert to this issue. How are we to tackle the heavy costs of Medicare? Who can say?

This issue creates a conundrum for me. On the one hand, I am very worried about the out-of-control spending increases within the new health bill. On the other, I am very leery of price caps, and especially price cuts, being imposed on doctors. Too many doctors are already opting out of Medicare, feeling that Medicare's pricing and paperwork are not worth the candle.

Ask, And Ye Shall Receive... Catholics And Mental Illness

Aspect of Need Addressed: Spiritual

Since tonight I seem to be focusing on how the Catholic Church handles mental illness, I also found a helpful article in U.S. Catholic about the subject, called "Through the Glass Darkly: How Catholics Struggle With Mental Illness" by Anna Weaver. See it at this link.

See also my comment on the article.

Mental Illness: A Catholic Response

Aspect of Need: Spiritual

Among various organized religious responses to mental illness, here's something from the Catholic Church in the U.S. called the National Catholic Partnership on Disability. Frankly, it doesn't seem to offer too much about mental illness. The Partnership generally addresses disabilities of all kinds, such as blindness, deafness and mental retardation, as well as mental illness. I was hoping for a more specific, focused and dedicated Catholic outreach on mental illness alone. I will keep looking.

Meanwhile, you can have a look at what the Partnership does offer. For instance, on May 4, 2010 the Partnership is hosting a webinar entitled "Advanced Considerations: Mental Illness in Youth and Young Adults." But it costs $30.00 per computer to attend, which would seem to dampen widespread participation.

St. Dymphna, Patron Saint Of The Mentally Ill

Aspect of Need Addressed: Spiritual


Searching the Internet this evening to learn about other supports for families afflicted by mental illness, I discovered something that I as a Catholic should have sought out sooner. I found out about the patroness saint of the mentally ill, St. Dymphna of Gheel.

Born in Ireland in the 700s, Dymphna was the daughter of an pagan Irish chief named Damon and his Christian wife, who died when Dymphna was an adolescent girl. Overwhelming in his grief, Damon searched the world to find another woman as beautiful as Dymphna's departed mother. But he could find no other like her.

His mind now addled, Damon turned his sights to his own daughter, who resembled her mother in all her beauty. Immeasurably distressed by her now mentally ill father's incestuous entreaties, Dymphna confessed the matter to her priest, St. Gerebernus, and then with him fled Ireland for Belgium, settling in Gheel. Through spies, her father discovered her whereabouts and eventually found her and her confessor in Gheel. Damon beheaded the priest and then once more demanded that Dymphna surrender to him. She again refused, upon which her enraged father killed her.

The site in Gheel where she died is today known for miraculous healings of the mentally ill. In the 1300s, Gheel became the site of a gentle form of deinstitutionalized psychiatric care, whereby mentally ill individuals would be placed in home care with host families. It is also known for a well-known sanitarium for the mentally ill which apparently still stands today.

Lost... And How To Find: Two Good Products

Aspect of Need Addressed: Functional

If you are a reader of my tandem blog, PsychOdyssey, you'll remember the harrowing night when my schizophrenic son relapsed with substances, got behind the wheel on a cold winter's night, and then... got lost! (See "Lost... And Almost Not Found".) Although he was way high and drunk, and presumably nearing psychosis, thank God he had sense enough to call me on his cell phone ("Dad, I've relapsed, and I don't know where I am!").

He didn't know where he was, and we had to find him. But he only had 15 minutes of battery time left on his cell phone. We didn't have the GPS function active on his cell phone. And the police couldn't track him on their radio waves without a judge's consent, which would have taken three hours. In the end, I had to phone-coach my son, even though inebriated, to drive (carefully!) back to a place where we could pinpoint his location of a map. Thank God he was able to do that (without getting arrested), and thank God we were able to rescue him safe and unharmed.

But I resolved from that point that we must always know two things: where my son is and where his car is. I set out to find technology to do this.

Cell Phone Locator

Verizon Wireless, with which my family has a family plan, has a feature that can allow the account holder to track the location of any of the cell phones associated with it. The feature is called Family Locator, offered at $9.99 per month. Family Locator requires a recent-issue cell phone that has capacity to send and receive GPS signals. Since my son's phone was an older model, I had to replace it with a new phone. I procured the most basic phone, which didn't cost me anything except the requirement to extend my phone plan another two years. Family Locator works fine. Through Verizon Wireless's website, I can press a locator button, and after a few seconds a map appears with the exact location of the cell phone. This is a beautiful thing for reducing my worry about being able to find my son in case something has gone wrong.

But it is not a complete answer...

Car Locator

What is the phone runs out of juice? Or if the loved one forgets to take it? Or, most likely, if he or she turns it off? Then the Family Locator is of no use.

There is another solution, one that comes with a clever name: ZoomBak. Owned the Liberty Media (which is led by the well-known media mogul, John Malone), ZoomBak is a personal GPS locator service. ZoomBak makes a small device (as pictured above) which a kid can carry in his school bag, a dog owner can attach to his dog's collar... or a worried father of a relapse-prone loved one with schizophrenia can install in his car.

The ZoomBak service all-in is a little expensive. The device itself costs $149. The car installation kit costs another $49.99. And the monthly service runs $19.99 per month (or, "just" $0.60 a day!...), with a discount for signing up for a longer contract. As with Verizon's Family Locator service, a ZoomBak user can dial up through the ZoomBak website exactly where the device is. When installed in a car, the device is continually powered by the car battery, so will never run out of juice.

But I've decided this is worth the money. I may not be able to prevent my son from relapsing, but now I am assured that I can find him wherever he is, before his relapse might get him into more serious trouble.

Wrestling With The Long Arm Of The Law

Aspect of Need Addressed: Legal

Families with mentally ill loved ones are no strangers to the legal system. Whether through abuse of substances or acting out in the midst of relapses or just accidentally, too often our mentally ill loved ones run afoul of the law. This can be one of the most harrowing experiences a family can experience.

The National Alliance on Mental Illness, New Jersey State chapter, has published a helpful pamphlet to help families navigate the legal system after, and before, problems occur.

See it here.

Housing... Another Waiting List Update Demand

Aspect of Need Addressed: Residential

Housing. Specifically, affordable housing. More specifically, subsidized housing, at a rental rate that a mentally ill loved one on SSI and SSD (receiving about $700 per month) might be able to afford. It's one of the toughest nuts to crack for a disabled loved one who may wish to live independently.

After my son became disabled, I searched the State of New Jersey to find whatever of this scarce resource I could find. I did not find much.

One of the sectors of housing I searched was the Public Housing Authorities. There are about 35 of them in the State of New Jersey. These PHAs originate from legislation during The New Deal under Franklin Roosevelt. They supervise publicly financed government housing that can offer residences to qualified applications at rents totalling 30% of an applicant's income, whatever that is. Theoretically this is attractive to those on SSI and SSD. If one is receiving only $700 per month, then one's monthly rent, at 30% of income, would be $210. That would be an incredible deal in New Jersey, where a market rate studio apartment might run $800 or $900 per month.

But! Local PHAs give preferences to their own local citizens. The available slots are rare, rare, rare. All one can do is apply to get on innumerable wait lists, keep a watch on them, and be ready to respond immediately when notices come your way. Most of such notices are merely waiting list updates. Failure to respond to these may result in being dropped altogether.

Trenton Housing Authority's Notice

Now that my son on innumerable waiting lists, one of the agencies has just sent a letter: The Trenton Housing Authority. This communication can give a sense of the challenge housing poses.

[Note: As you read this, keep in mind how, or whether, a mentally disabled citizen would manage this process... Ed.]

Letter from THA

Dear [ ],

We are presently conducting interviews for applicants on our waiting list. This is a preliminary interview to update your information only; it DOES NOT MEAN that you are going to be housed at this time.

Please contact the Admissions and Occupancy Department at [ ] to make an appointment with [ ]. If you do not respond within five [5] days from receipt of this letter, we will assume that you are no longer interested and your name will be removed from the waiting list.

At your scheduled appointment, please bring in the following documents (if you have not already supplied us with this information):

1. Social Security Cards and Birth Certificates for yourself and each person listed on your application.


2. Verification of any and all income such as Employment, TANF, Child Support, SSI/SSD, VA Benefits, Unemployment and any other form of income that is received which may not be listed.


3. For Employment, your employer must mail or fax all wage information. It should state your rate per hour and the hours you work per week and /or your annual salary.


4. If homeless, a third-party verification from a public or private facility that provides shelter for homeless individuals, the local police department, or a social service agency, certifying the family's homeless status.


5. If substandard, provide a third-party verification from a government agency or present landlord indicating substandard conditions existing at home (such as no lights, no running water, etc.). If required, you must provide entrance to your home by one of the Admissions and Occupancy staff to investigate the substandard conditions.

Sincerely,

[ ]

Manager, Admissions and Occupancy

THA History

[Note: To put this letter into context, here's a little history on the THA, lifted from its website... Ed.]

The Trenton Housing Authority began like other public housing agencies in the United States, with the federal government's creation and funding of nationwide public housing. The Housing Act of 1937, however, drastically changed the federal government’s role in public housing by placing ownership and production under local control. This important change allowed Trenton to create its own housing authority on December 18, 1938 by City Ordinance, in accordance with New Jersey enabling legislation.

Today, the Trenton Housing Authority is an autonomous body that is charted by the State of New Jersey, partially funded by the federal government, and governed by a seven member Board of Commissioners. Five of the Commissioners are selected by the City Council, one is chosen by the Mayor and one is chosen by the Government. The Organization is like a hybrid with each entity having a stake in the authority.

The very first public housing complex in Trenton—Lincoln Homes—was built in 1941. The second development—Donnelly Homes—was built the following year. Both sites were constructed to accommodate the housing needs of immigrants from southern states, most of which were African Americans coming to the city to take advantage of job opportunities in the industrial sector.

The original housing complexes were predominately three-story walk-up and town house configurations. In 1945, near the end of World War II, Prospect Village was built offering more housing opportunities to families in need. In 1952, three additional developments were created—Kearney Homes, Campbell Homes and Wilson Homes.

Over the past 30 years, the THA has served nearly 2,000 households. Several new housing sites have been added to meet the growing needs of families in Trenton. The biggest challenge facing the Authority is the increased demands for housing with limited resources and support. Even with this challenge though, the THA is committed to providing the best possible service to our clients. Nothing is more important.

THA and HUD Eligibility Requirements

[Note: And here are the requirements, also from the website... Ed.]

An applicant must be 18 years of age or older to be designated the head of the household and qualify for public housing assistance. THA defines heads of household as an adult member of the family that has agreed to be wholly or partly responsible for paying the rent and has the legal capacity to enter into a Lease under state and local law. Emancipated minors that have court orders and qualify under state law can also be recognized as heads of household and are eligible to apply for housing.

At least one member of the household must be a US citizen or eligible non-citizen.
The applicant must have an annual income that does not exceed the low-income limits established by HUD. These income limits are posted in all THA offices and below:

The income limits for families with more than eight persons are determined by adding to the eight-person income eight percent of the four-person base. (Example: The nine-person limit equals 140 percent 132 of the relevant four-person income limit). All income limits are rounded to the nearest $50 to reduce administrative burden.

The applicant must provide a Social Security number for all family members, age six or older, that will be living in the housing—or they must provide written certification that they do have Social Security numbers. The applicant must meet or exceed THA’s "Selection and Suitability Criteria" including attendance and successful completion of the THA’s pre-occupancy class. Applicants with any outstanding debts to the THA (or any other public housing authority) from previous tenancy in a public housing program must be paid in FULL prior to admission. Applicants must pay any previous debts before they are eligible to apply for new housing—No Payment Agreement Will Be Accepted.

Tax Time... Even For The Disabled

Aspects of Need Addressed: Financial

The last thing I thought my son would need to do is file a tax return. He is on SSI and SSD, on Medicare and Medicaid, all due to his disability. He held a part time job for a few months which earned in total about $4100. As is so for most psychiatrically impaired loved ones on disability, my son's economic station compared to the rest of the country is on the lowest rung of the economic ladder. But, it turns out, there is a benefit to filing a tax return even for, indeed especially for, those like him.

Money Back From EIC: Who Knew?

The major benefit is the Earned Income Credit. This is a tax provision which provides cash refunds to certain low and middle income filers even if they don't actually pay any tax. The minimum age to file for an EIC is 25; the maximum is 65. The maximum earned income limit varies depending on marital status and number of children. SSI and SSD are not counted as earned income. Full details about EIC appear in a special IRS Publication, No. 596, "Earned Income Credit." (Of course it is... 68 pages long! How does the IRS expect the mentally disabled to navigate such a long document, and that just for one aspect of the tax code!)

There are 7 basic rules for EIC:

1. A filer's Adjusted Gross Income must be below a certain level.

2. A filer must have a Social Security Number.

3. A filer must not file "Married, Filing Separately". (A filer can be single.)

4. A filer must have been a US citizen or Resident Alien for at least a year.

5. A filer cannot file a Form 2555 (for Foreign Earned Income).

6. A filer's unearned investment income cannot be more than $3100.

7. A filer must have at least some earned income.

There are other rules for those filers who have "qualified children". Since my son is single, this does not apply to him.

There are other rules for those filers without children, like my son. These are:

8. A filer must be between the ages of 25 and 65.

9. A filer cannot be claimed as a dependent by another filer. (This can create an issue for parents of mentally ill loved ones who still live at home, but cannot be claimed as dependents.)

The EIC accrues immediately upon the receipt of even only $1 of earned income, which would create an EIC of $2. The EIC rises to a maximum of $457 for earned income between $6000 and $7500, after which it reduces again to zero when earned income is $13,300. Thus the maximum possible EIC benefit accrues to the filer who has earned income of between $6000 and $7500--which is exactly the kind of filer most psychiatrically afflicted loved ones on disability earning part-time wages tend to be.

My son, being 24, cannot qualify this year. But had he qualified, his Federal EIC for the income he earned from his part-time work, being $4100, would have been $310. The maximum EIC that he could have received as a single filer would have resulted from earned income between $6000 and $7500. That EIC would have been $457 for 2009.

Then there is also State Earned Income Credits, which can increase the amounts of cash returned. Had he been of sufficient age this year, he would have received $80 of EIC from the State of New Jersey.

Unfortunately my son, at 24, just missed the cut-0ff age. But it was good for him to file anyway to get himself recognized in The System of the IRS, so that next year he will be able to establish more easily his bona fides.

Worth The Effort: Other Money Back

Even though he is not old enough for EIC, there are other benefits to him filing his return. As it happens, his disability enables him to claim back moneys deducted at the State level. While the refund of $10 is not so much, it establishes something to which in his disabled status he is entitled. And he was pleased to be able to take advantage of such refunds.

Free Help With Tax Prep

There is another benefit out there of which too many mentally ill loved ones may not know. The AARP (and others) offer volunteer tax filing help. It was a delightful experience. At the Princeton Library today an AARP tax filing volunteer (Mr. Chris Eggert, formerly a banker at Citibank in New York before retirement), worked with my son to file his return. Within 30 minutes all the questions had been asked and answered, and with my son's permission Mr. Eggert pushed the button on his computer to "e-file" my son's return. Done! Now my son has a tax file with his first filed return, which will set him up nicely for next year when, hopefully, he will be back to work, earn a reasonable amount of extra money (without overly burdening his SSI requirements), for which then he might be eligible to receive back, say, about $450 of additional support. With SSI and SSD currently maxed at $695 per month, a "refund" of $450 would be no small matter.

Double Trouble: A Good Presentation On Co-Occuring Disorders

Aspects of Need Addressed: Medical, Psychiatric

Many of our loved ones who struggle with mental illness also suffer from a co-occuring substance abuse disorder. This can be "double trouble". It has been for my son. But now he's been clean for about a month now. He's making progress.

I am always interested in seeing new information on this terribly vexing problem. Here's a good presentation by Hazeldon and WestBridge Community Services. I am particularly fond of WestBridge, which my son attended for a while. It does a very good job in treating dual diagnosis cases.

Here's the presentation, a slide show. (Be patient. It's a big file and will take a little while to load.)

SHIP 3: Got The Appointment... For 7 Days From Now

Aspect of Need Addressed: Medical, Financial

Still working on my son's Medicare Part D prescription drug insurance...

Background: My son's previous insurer, Fox Insurance, was kicked out of the Part D program by CMS, the Medicare administrators. So he has to find a new plan. Before he can determine which is the best option, he must determine how any of the prospective plans interface with NJ Medicaid, under which he is also covered. My research determined that there is a State Health Insurance Counseling Program, called SHIP, funded by Medicare, that can help him with that. Earlier this week I had spoken to the SHIP Coordinator for Mercer County, who was to help me get an appointment with a SHIP Counselor.

Today I spoke with The counselor she had in mind for my son isn't available. So we've scheduled for my son to visit with another counselor, on March 31.

I'm looking forward to the appointment. I am observing, however, (and not yet judging) how long it is taking to get from the decision to get help with the Medicare-Medicaid interface to the time it actually will be offered. From the time we began seeking a change in his plan to time we discovered through research of SHIP's existence: 2 days. From the time we were offered an appointment with a counselor until the time one was available to see us: 7 days. This is itself perhaps is not so extraordinary, especially when working with agencies in which the workers are certified volunteers. There must be a relative scarcity of such qualified counselors. Hence the time it takes to get an appointment. Kind of like a doctor... I am keeping track of this initiative and all my son's other various initiatives on a master to-do list, managing from it every day like a regular job. One has to keep on top of such things.

But can a mentally ill loved one with a thought disorder manage this process on his own? The complexities of Medicare and Medicaid? Finding out that there is a SHIP and what it does? Finding the right person to call? Learning the process of getting an appointment with a counselor. Getting that appointment seven days later? There's a lot to keep track of. Can this system be made more simple or direct? How will this be after ObamaCare is implemented to include 30 million more people on the Medicare/Medicaid roles? I don' t think our waiting times for appointments will be reduced...