Single dad, disabled daughter - sometimes it all seems uphill

When in doubt … email!

On February 6, 2010, In Guardianship

So, a bit more on the guardianship panic issue. I sent the following email to four children’s hospitals (L.A., Chicago, NY, and Boston) and two major adult teaching hospitals. It was sent to whatever principals I could find, typically the COO.

I am having a very difficult time getting the proper answer to a question that is quickly becoming very important. Hopefully you will be able to pass this on to the appropriate person, I appreciate your time and consideration. I wish it was a hypothetical question.

If a severely disabled eighteen year old woman (emancipated, non-verbal, non-mobile, etc.) came in to your hospital, either via the ER or in a clinic, and the woman did NOT have a guardian nor (obviously) a health care proxy, would anyone be consulted in her needed care? Could a family member legally be kept fully informed, or make decisions, if it was not emergency or life saving situation? And if it was an emergency? Again, no court appointed guardian.

Thank you for any and all information.

After a week and a half, that included a follow-up “is anyone there?” two of the hospitals responded, Boston and Los Angeles Children’s Hospitals. I know that Chicago and NY read the email, but they ignored it.

click here to continue reading …

Everything’s fine … now.

On February 2, 2010, In Uncategorized

My parents used to cringe when that was how I started a phone call from college. We still joke about it.

Something happened recently that I decided not to blog about. You see, I am generally a happy person, I go about my day like we all do and when some s**t falls from the sky, well, I blog about it. This blog is about the tougher part of being a single dad with a severely disabled teenage daughter. Yes, I have her, own a high tech company, and a small coffee company, and do all sorts of stuff. And life goes on, and all in all, it is pretty good. I have the respect of lots of people, good friends, great family, incredible daughter, great son, etc. But here, on this blog, you just see the pot holes. So this thing happened, and trust me, it was devastating, and I decided not to blog about it. Sort of like, heck, I wouldn’t believe it either. Wheelchair, guardianship, then this … no way.

Now that it is solved, I think, I’ll share. So, like I said …

Hey mom, everything’s fine … now.

click here to continue reading …

Just the facts ma’am. Then I’ll shut up.

On January 31, 2010, In Uncategorized

I don’t know if this topic is of interest to anyone that does not have a 17 year old … I’ll stop ranting after this post. I have gathered the facts and will share them in this post concerning health care and education when your child (any child) reaches the age of majorityAge_of_majority …

click here to continue reading …

“If I don’t think about it, it won’t drive me crazy.” ~Aaliyah [UPDATED!]

On January 28, 2010, In Uncategorized

RE: Guardianship. I was asked why it is such a big deal to me right now that there will be a period of time, up to a year, that Pearlsky is emancipated and does not have a guardian. I spoke to two lawyers yesterday, did some research, and it gets deeper. Note that I am still researching and finding out more.

In this state, Pearlsky will become emancipated (”a legal mechanism by which a minor is freed from control by their parents or guardians, and the parents or guardians are freed from any and all responsibility toward the child”) automatically at age 18. This happens no matter what her mental or physical state is UNLESS a court determines otherwise. Only a court of law can proclaim someone incapacitated or some other designation. She does not automatically become a ward of the state, she only becomes a ward (of mine, the state’s, etc.) at the determination of a court.

Pearlsky will be emancipated on her 18^th birthday. I cannot become her guardian unless and until a court of law determines she is incapacitated and then grants me guardianship.
Once she is emancipated, I cannot see her medical records (federal and state law) nor talk to doctors unless I am her guardian. It appears that we cannot do a health care proxy now that would take effect later. Lawyers are checking. [see update below]
Once she is emancipated, I cannot sign her IEP, nor make therapy decisions, unless I am her guardian.
Two mandated reporters have questioned the appropriateness of a man, me, caring for his daughter. One started a formal complaint against me that was quickly stopped by doctors, but it was started nonetheless. I will have NO legal standing against those with the prejudice of a father caring for a daughter if I am not her guardian. The legal advice I received yesterday was that yes, the problems would get much larger with such a complaint, potentially resulting in my immediate arrest as well as removing her from a supposed situation. Both problems in the past involved simple personal hygiene.

I get the response, “oh, that won’t happen,” yet it does everyday. When my dad was in the hospital, the nurse who knew I was his son, who knew me right away since dad had told her how thrilled he was I was coming, that nurse would not tell me a single thing due to HIPAA. It made no sense since he was at that point unconscious, but she would not. What about the school nurse who has stated that it is wrong for me to be caring for Pearlsky since I am a man, accused me of neglect because Pearlsky was having an estrogen surge, what will she do when Pearlsky is emancipated? She will not be allowed, by law, to call and ask about meds, to ask about giving Advil or valium, HIPAA stops her from such. Both lawyers I spoke to were very concerned as they know me and know Pearlsky, but alas, they do not specialize in family law. At least not yet.

The state Department of Mental Retardation will do the work for no cost, but it can take up to a year after her emancipation. A private lawyer will cost thousands of dollars with no time guarantee.

Should have just gotten that puppy …

Update: No, I cannot be her health care proxy. Directly from the law:

Every competent adult shall have the right to appoint a health care agent by executing a health care proxy. Said health care proxy shall be in writing signed by such adult or at the direction of such adult in the presence of two other adults who shall subscribe their names as witnesses to such signature. The witnesses shall affirm in writing that the principal appeared to be at least eighteen years of age, of sound mind and under no constraint or undue influence.

I hate when my rant gets sidelined

On January 27, 2010, In Guardianship, School

I was all set to write about summer camp again. The school is starting to think about what to do with Pearlsky this summer (after an email from me asking what they are going to do with Pearlsky this summer). There were some quasi-infuriating emails already, and I was just about to post about it when the proverbial shit hit the fan.

Mary got back to me. Mary works with the state’s department of mental retardation (DMR) and is Pearlsky’s case worker. I have not spoken to her in years since all is going well (within Mary’s purview). I had left a message … the topic: guardianship.

Pearlsky turns 18 later this year. The moment she turns 18 her world changes, she is legally an adult and I legally am nothing. Well, still her father, but if not appointed by a court as her legal guardian I cannot make medical or financial decisions for her among other things. I am researching the exact parameters and will be posting about that. But here is the kicker …

So, Mary, can the DMR help with guardianship?

Yes, we will do all the work. It has gotten very complex in the last few years and our lawyers will take care of it all. We need to involve a doctor, social worker, psychologist, lawyers and the court. It will all start when she turns 17¾.

And we will go to court and be done before her birthday?

Oh no. You cannot go to court until after she turns 18.

So there is a period of time, maybe just a day or two, where I am not her guardian and everything is at risk?

Yes, but it is more than a day or two. We are averaging six to twelve months, and that is if we don’t have a freeze. We are not allowed to start the process until she turns 17¾.

Understand that there will be six to twelve months where Pearlsky does not have a legal guardian. Don’t laugh and say “But you’re her father” or the like, that is moot in many cases. If she is in the hospital I will have no say in anything. Even worse if some nurse or resident or other person wants to file a bizarre complaint. Yes, if it is our hospital, the doctors know us well, and it should not be too much of an issue. But if it is not our hospital? I don’t believe I can sign an IEP since she will still be in school (until she turns 22).

This is a topic I will be revisiting. There can be devastating results when this population does not have a legal guardian once they are over 18. As I said, I am doing the necessary research, I don’t want to base any worries or actions on the stories I hear, I want facts, and will pass them on.

Parents are the legal guardians for their child until that child reaches his 18th birthday. Once a disabled person has reached 18, most states identify this individual as legally emancipated, an adult capable of acting in his/her self-interest, regardless of any developmental disability. … Without a legal guardian, an individual with developmental disabilities may encounter difficulties obtaining medical treatment and /or accessing social services. … If a disabled individual does not have a guardian they can be liable for any financial and legal obligations he or she incurs regardless of their ability to pay them.

But I will leave you with this story on the issue from a trusted source.

“The Nobel Prize in mathematics was awarded to a California professor who has discovered a new number! The number is bleen, which he claims belongs between 6 and 7.” ~George Carlin

On January 24, 2010, In Parenting, Random List

Today was pretty much a normal day.

Today I gave Pearlsky 11 different medicines in 23 doses, during seven different “med times.” Knowing that this number has varied since birth, I calculate that I have given her approximately 84,500 does of medicine.
I changed her diaper five times today. Over her lifetime, accounting for time in school and with nannies, I have changed over 18,000 diapers.
She had a bath this evening. Probably close to exactly her 2700^th (cool!) and I gave her every single one of them.
Tonight she heard me say “I adore you, Pearlsky, sleep goodly” for the 6,304^th time.
Pearlsky has bitten me three times hard enough to break the skin. I believe at least two times were unintentional.
In the last 60 days Pearlsky has been visited by her mother twice for a total of about 40 minutes. Understandable since her mother does live a whole 5 miles away.
Pearlsky’s average seizure is about two minutes because I stop it. If I do not, they have been known to last up to 20 minutes. I estimate she has had up to 4,000 seizures in her lifetime.
I have raised my voice to Pearlsky once, early on. I still hate myself for that. Even if it is defensible. It simply cannot be defensible.
A box of Girl Scouts’ Thin Mints contains 32 cookies. I know that because I ate every one of them while writing this post.

I am working on a new project and I need your help. Actually, I won’t do it without you. I find that there is a lot of information concerning “severe special needs” I need that is scattered or difficult to find and no way to pass it on when found (other than a blog, but far be it for me to blog, don’t believe in them). So, the solution I am working on? Well, it is part blog and part “wiki.” The “wiki” part (yes, like Wikipedia) means that it is an effort from many people joining in with their knowledge and in this case, advice. It is vital, though, that facts are differentiated from advice and this must be taken seriously. So if you want to help, and realize that I am now just two days into this project (or just 10 diapers into it, if you will), you can take a peek at the very beginnings, mostly place holding pages, I need more category and article ideas and then we need to start filling them in. So, do not tell anyone yet, just between you and me, here is the very very start, and here is a sample page (content mostly stolen, will be replaced). Do I continue? Will you help?

The Wolf came a knockin’ …

On January 23, 2010, In DME (wheelchair, etc.)

The Chief Operation Officer of National Seating and Mobility (NSM), Sandi, has had enough with the wheelchair debacle and finally took charge! Now, remembering the video rant of this guy (which has been watched 100’s of times!) over my wheelchair woes, she sent Winston Wolf (”The Wolf”) over to the house …

And just like in the movie, Winston took right over. Tape measures, pads of paper, calls to manufacturers, spewing words like abduction, hyperextension, range of motion, tone, flexion, hypotonic, hypertonic and all the while a wry smile and an air of self confidence.

Two and a half hours later Winston says …

Well, before I came I thought it would just be a matter of ordering a new back or something simple. Turns out the only part of this chair we will save is the seat belt. Every other part will be re-ordered and we will construct the correct chair for your daughter in a couple of weeks.

Followed by a smile and a “have a good day.”

So we are getting an entire new wheelchair (the third in two months, but who’s counting?). One that meets all of Pearlsky’s needs, all the features I need in the chair, one that works! We are, to say the least, very excited.

It took a bit of bitching complaining emailing on my part, but once the problem came to the attention of the right person at NSM (and it appears Sandi is definitely the right person) things got moving in the right direction.

Oh, and in all fairness, Winston looked nothing like Harvey Keitel. She was younger, prettier, better educated, wonderfully gentle with Pearlsky, tolerant of Pearlsky’s father, and, well, only had a bit in common with Winston Wolf. So, for this week at least, we have TWO new best friends, Mala A. of National Seating and Sandi!

Next wheelchair update in a few weeks …

Remember, you cannot spell “assessment” without a-s-s

On January 20, 2010, In DME (wheelchair, etc.), School

A new form came home from school today, “Evaluation Consent Form.” Ok, I can deal. What kind of “assessment” do they want to do for Pearlsky? The young lady with NO communication skills, the young lady who does not appear to purposely look anywhere, whose verbalizations are the same for physical irritation as well as apparent enjoyment? They want to do a …

“Psychological Assessment – describes the student’s learning capacity and learning style in relationship to social/emotional development and skills.”

They admit she has never “learned” anything as far as we know, she does not even get graded, against all odds I got her out of NCLBNo_Child_Left_Behind_Act testing because you cannot measure any learning capacity in her and yet they want a psychological assessment on … wait for it … her learning capacity! And, an assessment that describes her “learning style”? Let me describe it for you, “NONE, NADA, ZIPPO, ZILCH.” Put that in your psychological pipe and smoke it. And who will do it? A social worker? A psychologist? The teacher? Feh. Forget it. (Actually, I think it is very funny and an attempted big waste of time and energy.)

Oh, what about the new wheelchair that was delivered several days ago? Remembering what mom always told me about having something good to say … Let’s see, about the new wheelchair:

Oh, and yes, she is still using the old one. I was temporarily blinded by the lack of scratches and the fact that the chair actually rolled straight.

The devil and the deep blue sea

On January 19, 2010, In Uncategorized

The only time we do not use a lift is bath time, there is no lift in the bathroom. All I need to do is pick Pearlsky up from her wheelchair, turn around and put her on her bath seat … then after the bath, vice versa.

This time, wet, clean and in my arms, she decided to seize. Okay, not decided …

The choices were to drop her on the ceramic floor, or to twist bizarrely into a position where I can go down to the floor with her. Her seizing made it impossible to put her in her chair or back on the bath seat as she was wet, slippery, seizing … and so we went down.

She is fine. I am on oxycodone and my umpteenth ice pack. The local spine center says I will survive; I guess that’s good.

Yes, we got the new wheelchair, again. Yes, it now wheels, you push it and it moves! Who would have thunk?

If it originally came in the condition it is in now, I would have been happy. Seeing that they knew they needed to get it 100% this time, well, it is about 95% … but we are happy. What’s a bit of touch up paint between friends?

More when the pain subsides …

RTS, NRRTS, wheelchairs – revisited

On January 15, 2010, In DME (wheelchair, etc.)

I admit it, I am not altogether happy with DMEDurable_medical_equipment and wheelchair vendors, companies, anyone affiliated with said organizations or the thought of trying to get a new chair. I also admit that, at times, I can be partial to a good argument. That said …

I recently posted about the National Registry of Rehabilitation Technology Suppliers and it was not pretty. In the comment trail, the president of said organization responded and our brief “discussion” quickly degraded and I temporarily stopped comments.

Being the kind of guy Single Dad is, I wrote to the Executive Director of the NRRTS and asked if he would like to respond to the issues. I promised him that I would share his reponse publicly, unedited, in context, and uncontested. Herewith is said response:

I can only imagine what it is like to be a single parent raising two children with significant disabilities. I am certain that the last barrier you need are problems with securing the things, i.e., wheelchairs, parts, etc. that they require. You mention that some of our NRRTS Registrants seem to vacate their ethical responsibilities when business decisions are involved. I don’t believe this is the case. That said, not selling you parts for cash makes little sense to me – but I don’t make the business decisions for our Registrants or the companies that employ them.

NRRTS has an avenue for you to address your concerns with the ethical behavior of individual NRRTS Registrants. We have a very well-defined procedure for receiving, reviewing and adjudicating complaints about the ethical and professional behavior of NRRTS Registrants. In the past we have suspended Registration privileges and in some cases barred individuals from NRRTS Registration for life. This is a significant action because in many states NRRTS Registration is one of the “ticket-to-work” credentials. Please understand that this is not a case of the fox guarding the hen house. Complaints are reviewed independently by members of the NRRTS Board and any individual named or involved in the complaint will not be a part of, or privy to, the review and deliberations. I have attached a copy of the form we need filled out to start the ethics review process. When you complete and return it I will personally shepherd it through the process.

Whether your situation is a direct result of funding and reimbursement issues or not, the climate that has created and fueled the problems you encountered has been brought on by ongoing efforts by Congress and by the States to solve their fiscal problems on the backs of people with significant physical and functional disabilities. Through funding cuts and draconian documentation requirements they have limited and in many cases denied access to much needed Complex Rehab Technology. Our industry and profession has been fighting this battle for years – with only small fleeting victories to show for our efforts. Each year we hold a legislative advocacy event in Washington, DC and visit the offices of our Members of Congress to lay out the problems and possible solutions. This year’s event, CELA 2010 – Continuing Education and Legislative Advocacy conference, focuses on consumer self-advocacy. We are providing scholarships for consumers and their families and care providers to join, alongside us, to champion the cause of appropriate access to these important technologies.

If you buy in to the idea that the root of the problems that you’ve encountered are a result of the climate created by legislative and regulatory action (or inaction); NRRTS invites you and your daughter to join us, travel and lodging paid by NRRTS, for CELA 2010, April 28-29, 2010 in Washington, DC. Here is the link to our scholarship application. I’ve also attached some information about CELA for your review.

I look forward to hearing from you.

Simon Margolis
Executive Director
National Registry of Rehabilitation Technology Suppliers
smargolis@nrrts.org

Here are the documents he attached …

CELA 2010 Brochure
NRRTS Ethics Rules and Procedures
NRRTS Complaint Form

Pearlsky is scheduled to get her new chair, again, on Monday. Stay tuned.

When in doubt … email!

Everything’s fine … now.

Just the facts ma’am. Then I’ll shut up.

“If I don’t think about it, it won’t drive me crazy.” ~Aaliyah [UPDATED!]

I hate when my rant gets sidelined

“The Nobel Prize in mathematics was awarded to a California professor who has discovered a new number! The number is bleen, which he claims belongs between 6 and 7.” ~George Carlin

The Wolf came a knockin’ …

Remember, you cannot spell “assessment” without a-s-s

The devil and the deep blue sea

RTS, NRRTS, wheelchairs – revisited

Single dad/disabled daughter

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