August Updates

August 30, 2010

This month, I have posted on trying to get Lauren’s wheelchair repaired, and on trying to find a substitute caregiver. I thought you might like to know how things turned out.

First – the wheelchair. The provider did show up a week later as promised (much to my surprise) with the correct parts and repaired the chair. Of course, you would think that if you replaced the tires that you would make sure the brakes worked with the change...he didn’t. I caught him before he escaped out of the driveway and had him come back in and fix the non-working brakes. Otherwise, the repairs are fine. Yeah!

Second – finding a substitute caregiver. As I had posted, I went to a staffing agency to try to fill this position. Although they were interested, I was concerned that their rate would not work with Lauren’s Real Life Choices budget. I have now heard that their rate has been approved by the State. But, I don’t know what that rate is. So, now I am waiting to hear if Lauren will have enough money in her budget to cover the rate. So, our progress is slow, but it is moving in the right direction.


August 26, 2010

I’ve been an advocate in the developmental disability community for about twenty years. The terminology that is used to describe people, services, and supports changes frequently with every change in how, where, or when services and supports are provided. Instead of simplifying things, being more respectful, or becoming more “person-centered” the new terms frequently just become another way of distancing or separating people with developmental disabilities from the mainstream of society.

Take the term “person-centered thinking” – now there’s a concept. Do we really need a term to remind us to think about people as individuals rather than as a group? Instead of expanding to “person-centered planning, person-centered services, and person-centered approaches” shouldn’t we just be acknowledging everyone as individuals, family members, community members, and citizens?

Then there are all of the terms that have crept in along with self-direction or should I say self-determination...self-directed supports....self-directed services, whatever. We have programs called "Real Life Choices" in which a “Support Coordinator” (case manager) develops an “Essential Lifestyle Plan” and a “Health and Safety/Adaptive Behavior/Risk Summary in which we have ”Environmental Modifications” (Do you need a wheelchair, eyeglasses, a special spoon?), a “Behavior Support Plan” (What challenges can we help you with?), a listing of “Social Behaviors” and “Community Awareness” (How do you communicate?, What do you like to do with your time?, Can you tell time?) as well as a “Circle of Support” (Do you have family, friends?) Why, if we have to ask these questions in order to fill out the forms (that’s a whole ‘nuther post), do we need to give them terms that have no meaning to the individuals answering the questions – only to the professional asking them?

One of my favorite terms is “habilitation”. The State defines this as “Habilitation is the process of providing those comprehensive services that are deemed necessary to meet the needs of individuals with developmental disabilities in programs designed to achieve objectives of improved health, welfare and the realization of individuals’ maximum physical, social, psychological and vocational potential for useful and productive activities. Although the specific services will be described in an individual’s Plan of Care, habilitation services are designed to develop, maintain and/or maximize the individual’s independent functioning in self-care, physical and emotional growth, socialization, communication, and vocational skills.” ...In other words – what supports does this person need in order to live his life? This is only the first two sentences in the State definition. It continues on for an entire page.

And then there is the most recent term I’ve been become involved with – "Direct Support Professional", what we used to call caregiver or staff. Now I fully support efforts to professionalize and give due respect to the underpaid, overworked individuals who provide care for individuals with developmental disabilities, but isn’t that title a bit much? There is something inherently wrong with a twenty-five letter, three word term to describe anyone’s job. Think about it nurse...or even better, RN, lawyer, realtor – all respected professions that manage without run-on titles. It just feels excessive even in a community that seemingly wallows in verbiage. All I know is, If President Obama can call the people who help him live his life “staff”, why can’t my daughter?

Incontinence Products and Medicaid

Anyone over the age of three who is on Medicaid is eligible to receive incontinence products if prescribed by a doctor. I’ve been putting off going this route for Lauren for years. Primarily because for most of those years the “pull-up” style brief that she wears was not available. Now, they are. So, I’m finally getting my act together to access diapers through Medicaid rather than Shop-Rite. At seventy-five cents a diaper, plus a liner (which I order through Amazon since no one else seems to carry them anymore), plus chux, it adds a lot.

As I discussed in my last post., the first step was to get a prescription. I faxed the pertinent data – type of diaper, size, quantity – to the doctor’s office with all other necessary information and waited for the prescription. Two weeks....nothing. Called them to check on the problem – they said never received the fax. Faxed it again, prescriptions arrived two days later. Then I took the prescriptions to a durable medical supplier (DME). Now, they have to verify insurance and will get back to me with her eligibility or will get back to the doctor to request more info. They could not show me the type of diaper Lauren will be getting. If it is plastic covered, we can’t use it. The clerk kept saying, “Ask them when they call.” “Tell them what you want.” “They’ll know the answer to that.” Till I stopped her to ask, “Who is they?”

“Oh, that would be our parent company.”

“OK, and where are they?”

“A couple of blocks up the road.”

“So, shouldn’t I be talking directly to them instead of you?”

“Oh, we’re thinking about merging. We’re probably going to be moving to a larger place.”

Is this not already more trouble and confusion than it’s worth? Time will tell. I leave my phone number and go buy diapers in Shop-Rite. I think it could be quite awhile till we see diapers arriving via the DME.

And, if you read my last post you too know that Medicaid now requires a new prescription and a new request every six months. Isn’t this going to be fun?

Required Reading

August 19, 2010

Friends and co-advocates often send me articles and news clips on various disability-related subjects. They are always interesting and worth reading. Unfortunately, I rarely have the time to read them all. So, when they arrive in my email, I drag them into a folder for when I have a few spare minutes. This morning I read a wonderful commencement address to new doctors graduating from Yale Medical School. The speech was given by a doctor and father of one of the graduates. Please take the time to read it yourselves; it should be required reading for every doctor, new and old, out there.

It should also be required reading for every bureaucrat and decision maker in the halls of Washington and our state capitals, who makes arbitrary, system-based decisions that adversely affect the lives of so many people. How many times have we heard – “It’s our policy”, “It’s the rule”, “That’s just the way it’s done.” How many times have those rules and policies been written based on isolated problems rather than the best interest of the majority? How often do the rules and policies result in placing more burdens on people than relieving the ones they carry?

For example:
  • Recently, a seventeen page, non-person centered document was added to the current multi-page ( in Lauren’s case forty-nine page) “plan” that is developed for each person in self-direction. Why?...because an individual in self-direction died when they did not receive appropriate care. So, what is done? They add the burden of more paperwork to all of the other individuals in self-direction. Does the new document add any information to the original plan? No. Would it have prevented this death? Probably not, because if this person had been receiving appropriate support – from the state – this would not have happened. It had nothing to do with paperwork.
  • Medicaid has just issued the announcement that if you receive diapers through them, they will now require you to submit a prescription and supporting documentation every six months. Who comes up with these things? So, some computer somewhere is going to deny someone diapers unless a piece of paper is submitted and, hopefully, processed by a federal worker (we’ll probably need to hire more to handle this). One, more thing for the overburdened to do. I just submitted a request to Lauren’s doctor for a prescription for diapers. We waited two weeks.... nothing. On calling the office, they said they never received the fax. So, I had to re-fax the request and now we are once again, waiting. Should people who provide care to individuals who require diapers be burdened with this additional requirement?
  • With funding limitations and freezes on development of infrastructure, pretty much the only way for individuals with developmental disabilities to obtain residential services right now is to ask for emergency placement. Now, to me the word “emergency” connotes a need for immediate action to alleviate some type of urgent problem. Currently, the average request for emergency placement in New Jersey takes an entire year to process. An entire year....who has the audacity to call that emergency placement?
It's all such a ridiculous, destructive, waste of time that could be put to such better use actually solving problems instead of making more.

Rainy Day Thinking

August 17, 2010

Many of us spend much of our lives trying to be the person our parents want us to be, then the person our spouse wants us to be, and our boss, and our children, and our friends, and on and on and on. Somewhere in there many of us lose sight of who we really are, what we want, what we need, if indeed, we ever really knew. Most of us have been trying to please everyone, but ourselves, for so long that we were children when we started...way before we could conceive of who or what we wanted to be as an adult. I think it takes a focused exploration of the journey we were meant to travel, rather than the journey we may find ourselves on, to truly evolve to the point that we can find the peace and fulfillment that so many of us are seeking.

No, I was not smoking funny things over the weekend, just doing some deep thinking. We had our first rainy day in this sun-baked summer we’ve been having. A rainy Sunday is almost an implied permission to take a break, be “unproductive”, maybe just sit and veg. I used part of my rainy day to think about something I’ve been putting off for a very long time – my personal journey. I’ve spent so many years moving as fast as I could, filling my brain with as much or rather more than it could comfortably hold, and trying my darnedest to avoid leaving space in my life for the truth of where my life was headed. I fear that I have filled my life up with everyone else’s expectations of what my journey will be.

As I waded through the gamut of emotions, regrets, and unformed dreams, I gazed at my daughter, sitting quietly with a gentle smile turning up the corners of her mouth. And it hit me. I, the mature, educated individual sits awash in discontent, struggling to come to terms with what could have been and what’s left undone, while my daughter, labeled cognitively deficient, sits happily content with herself. She is simply who she is. She finds no purpose in pretense, no need to be anyone or anything else but who she is. Her spirit is fully evolved while mine is struggling. Just who should be labeled wanting?

Substitute Caregiver Needed - Plan B

August 12, 2010

I have moved on to Plan B for finding a substitute caregiver. The newspaper ad and successive interviews resulted in no one to hire. So, today I decided to try something new. A staffing company has recently moved into our area. I met with the owner this morning and discussed our needs. He believes that his company can work with us to meet our substitute caregiver requirements.

Lauren will require that the same one or two caregivers be provided each time. It would be too difficult on her, and on the caregiver if a different caregiver came each time one was needed. The caregiver must be familiar not only with Lauren’s needs but must also be trained in fulfilling those needs. Most of the substituting will be planned, in other words, we will know ahead of time that someone will be needed. Therefore, it should be easier on the company to provide the same one or two people, than it would be in a last-minute substitution.

My greatest initial concern with taking this approach lies in whether the company’s rates will coincide with the rate for their services available through Real Life Choices, Lauren’s funding source. The company will have to become a Qualified Provider under Real Life Choices and their reimbursement will come through the fiscal intermediary. I have put them in touch with the people who will be able to figure that out. I hope the financial piece doesn’t put an end to this idea. If it does....I don’t have a Plan C.

Of course, I also have to be concerned with the company itself. They have only been in business for eight months. There are pros and cons to that. They are inexperienced, but that may also mean that they will be more open minded and flexible in developing a solution that fits both our needs. I would say I could check references, but I’ve never found that to be all that reliable. Who would give you a reference that wouldn’t be favorable?

So, now we must wait and see if this is going to work out. For now, the weekend caregiver is off again this weekend and another caregiver is on vacation for three days next week. Oh, and I forgot to mention that the remaining caregiver has been out sick for three days this week. It is very apparent that filling this substitute position is critical in enabling Lauren to one day become independent. Without this piece – that will never happen.

Wheelchair Woes.....Still

August 9, 2010

Back in April of this year, I posted about the woes of trying to maintain Lauren’s wheelchair. That was four weeks after our original meeting with a provider to discuss some repairs and order parts. Lauren’s chair needed new armrests, tires, and a footplate needed repair. At the end of May, the provider scheduled a time to come to our home and make the repairs. Then he cancelled. Three weeks later, I called to find out when he was going to reschedule. He wanted to wait because they didn’t have all of the parts, and he didn’t want to make two trips. Hello? Why were you coming a few weeks ago to make repairs with parts that you now say that you do not have?

Fast forward to last week, the provider is scheduled once again to come and make the repairs. He calls to say that he will arrive at three o'clock. He arrives at two o'clock. Unfortunately, at two o'clock, Lauren has just arrived home and has “flooded” her wheelchair cushion as well as assorted other pieces of clothing. So when the doorbell rings, I am running to the laundry room trying to find her clean seat cover (oops, still in the laundry basket – no clean cover), and throwing a chux over the gel pad while the caregiver is changing her clothes. AND, while all this is going on I have all of the doors open in the house, despite the air conditioning being on, to clear out the smoke and stench of burned potato. (As I mentioned last week, sleep-deprived me had totally forgotten I had put potatoes on to boil two hours before.) So, the provider walks in to utter chaos. He says, “Do you want me to come back?” “NOoooooo” Can you imagine? Lord, knows when he’d come back. Just give me a minute, I tell him.

I settle Lauren into her recliner and ask him where he’d like to work on the chair. He takes it outside to his truck. Ten minutes later the doorbell rings. Wow, he’s good, that was really fast. Oh, no, no, no. He very gingerly tells me that the parts that were ordered were the wrong ones – wrong size tires, armrests too small. “If it’s any consolation, the woman who orders the parts is no longer with us.” I’m sure he means no longer working for them and not dead, and no, it is not a consolation. He promises to order the parts as soon as he gets back to his office and is gone. A few hours later he calls with questions. What kind of tires does Lauren have now? What kind was supposed to be ordered? Um, I think you’re supposed to know all of this already, and now you’ve figured out that they don’t make those for that wheel. I’m very confused. It is almost five months since we started this process. Why do “we” not know what we’re doing yet? Now if you recall in my last post about this subject, I mentioned that the provider wanted the money "up front". Does anyone see something wrong with this picture?

Tired, Really Tired

August 4, 2010

Lauren hasn’t been sleeping well for a couple of weeks, very restless and coughing as the result of allergies. So...that means I haven’t been sleeping well. She’s actually just fine, because although she’s restless, she is sleeping. But I’m so tuned into every whisper of movement that comes from her room that I’m getting up ten times a night to check on her, and once I’m up, of course, every manner of problem and worry battles its way to the front of the line to prevent me from getting back to sleep. So, I’m seriously sleep deprived and even if I could get one good night of sleep – it wouldn’t help. You just get into a pattern of poor sleep and it take days or even weeks to get out of it and then to catch up on your sleep.

You know you’re tired when you are well aware that you seriously need a vacation and when faced with the reality of actually taking one – find it’s just too much trouble. That’s really sad. What’s also sad is the reality of “Who else would do this?”.  Who, in Lauren’s future, would willingly put themselves in the position of getting this exhausted? It's just not healthy and no amount of money (alright, no amount of money that Lauren could afford) would be worth it. Now, Lauren can go for months and sleep most nights without a sound. But, then we get into a period of time when sleeping is a problem. How do you plan for that? Do you have to have more than one person doing her overnights?  Do you have to have someone ready to come in just during those times when she isn’t sleeping? Would that be doable? I don’t know. 

Today, my reality is that I'm so tired that I can't think clearly and the fatigue is making me depressed.  I know I'm overreacting to things and overthinking things to death.  I completely missed an exit on the turnpike this week which I take all the time, and I seriously burned a pot of potatoes that I forgot for two hours that I had even turned on.  The smell finally alerted me.  My fatigue will eventually have an effect on Lauren's quality of care.  How can it not?  But for today..... I'm just really tired....and she's OK.

Substitute Caregiver Needed - Part Two

August 3, 2010

About an hour after I posted my last post I received the first reply from the ad for the substitute caregiver. And, an hour after that, I received another one. So I guess the ad directing people to the website wasn’t as bad an idea as I was beginning to think. By the end of the week the website had about thirty-six hits and I’ve received six inquiries about the position. Of the six, I asked four to come in for an interview. Unfortunately, the one that looked the most promising to me called and canceled after falling off her deck and injuring herself the day before. One interview was a definite no, another was a very nice woman with no real experience, and I still have to do the fourth interview. One mistake that I made on the website was in not being more specific about what I meant by “a minimum of two years experience with developmental disabilities and caregiving”. I thought that was pretty specific, but people are just picking up on the “caregiving” part, not the rest. So, if they’ve taken care of their grandfather with Alzheimer’s or are have “Mom” skills, they consider that experience with caregiving. I would definitely phrase it differently next time. more interview to go. Wish me luck. I’ll let you know if we have success.