Substitute Caregiver Needed

July 28, 2010

In two previous posts in January and in June of this year, I discussed the need for a substitute caregiver. After the last few months which included trying to fill a vacant shift, summer vacations, and sick days, I finally decided to take some action in order to find a substitute caregiver. I simply did not have the energy or time to respond to the myriad of phone queries that a newspaper ad might or might not produce. So, I tried a different approach. I put a very simple ad in the classifieds saying: Substitute caregiver needed for young woman with disabilities. I then directed interested parties to a website for all of the details.

There are many sites on the web that will host a website for free. They offer templates in which you can put all the information that you need to have on your website. I used for the website I designed to support this help-wanted ad. The Home page outlines the who, what, and why of our search. The job description details, caregiver requirements, and pay information are on a page called Job Details. Since we are looking for a substitute(s) for all shifts, I included another page, Daily Schedules, which is a sample schedule of Lauren’s day. Then on yet another page, Contact Info, I included contact information and what details about themselves I wanted applicants to provide to me when they emailed me. (If you want to check out the site go to I also set up a statistical counter on the site so that I could tell if I was getting any interest or “hits” on the site. It also tells me if they are looking beyond the first page, and the general geographic area in which they are connecting to the internet. I know it may sound complicated, but it’s actually quite easy to set up. Once again, there are sites that will do this for free. I use

I placed the ad to run for a week. (A plus to placing the shorter ad is that it is significantly cheaper to run, than an ad with all of the details in it.). So, as today is Wednesday – the ad has been running for four days. The site has had eighteen hits and no one has emailed me with interest in the position. The last ad I ran for a caregiver in April resulted in about ten phone calls. So, I guess the level of interest is comparable, even a bit better. And, this is summer which is always a more difficult time of year to hire someone. But, the level of interest is still far below what logic tells you it should be. The economy, joblessness, homes and families at risk seem to be the topic of every news broadcast these days. Yet, no one wants to apply for a caregiver position. I know I’m not the only one experiencing this problem. This is a subject that needs much further exploration and study. But for now...we have no substitute caregiver.

The Importance of a Plan for the Future

July 22, 2010

Recently a representative of the State, speaking at a presentation on New Jersey’s Medicaid Community Care Waiver, pointed out the importance of planning for your child’s future even if you do not have funding for services. He said that in the event of the need for an emergency placement, if the family has a plan, there will be a better chance of an individual ending up living the life their family would have wanted, than the alternative. Parents all fear what will happen to their child when they can no longer care for them. So, they fret about their number on the waiting list and fear what will happen in the event of an emergency placement. What most of us fear is that our child will end up in an institution. I’ve heard parents say that we are the only parents that hope that our children die before us. It is a depressing mindset that grows with each passing year of no answers and no options. It’s a terrible reality that we cannot help our children plan for a future when they are ready for it, but must rather plan for a day when disaster or disability strikes their parents. However, it is a fact of life right now. The only control we have is to do something proactive. Parents can make plans, figure out their options, and put it down in writing. If there is a plan in place, if it is a part of their will, a letter of intent, a signed document, it is much more possible that your wishes for your child’s future will actually come true. If your child should suddenly become in need of care outside of their home, and the people who have to provide that care have no direction, no plan to follow, they are going to take the path of least resistance – which may be an institution.

So, give yourself at least this bit of peace of mind. Make a plan regardless of your child’s funding status. If you feel that a group home could meet their needs – find a provider that you are comfortable with. Go out and shop providers if you have to. When you find one, let them know that you want them to provide residential services to your child when necessary. Make at least a yearly contact with them to let them know how your family is doing as well as checking on the health of the provider organization. Administrative changes can have an effect on the direction and quality of a provider

If you feel that self-directed supports would best suit your child’s needs, explore housing options, talk with family, the successor guardian or other people who can take over support coordination, become intimately acquainted with resources offered by both the federal and state governments. Meet with other parents whose children are using self-direction. They are a valuable resource in formulating a plan that will work.

Most importantly – write it down! Let the rest of your family know what should happen, how it should happen, and who to call if it doesn’t. Plan for the future. It is not a futile exercise. It may be the only insurance you can give your child….and yourself.

Happy Birthday Lauren's Mom

July 19, 2010

If you’re not in the mood to hear somebody whine – stop reading. It’s my birthday and I’ll whine if I want to. Actually it was my birthday last Saturday. I’m at the age when I know that I should stop dreading the ever increasing number and come to terms with the necessity of celebrating that I’m still a reasonably intact adult with family and friends who love and like me. But as the number progresses farther into the latter half of a century, I realize that the enormity of responsibilities, stresses, and sheer physical duties that encompass raising a child with severe disabilities has swept away the me that is Gail, and replaced her with the me that is Lauren’s Mom. If I don’t take stock and make an effort to make some “me” time once in awhile, to explore who I want to be when I grow up, I may grow old before I ever get there. So, in an effort to start this year heading in the right direction, I made plans just for me for my birthday. Nothing elaborate – a shopping trip for nothing specific (what a luxury) and a fancy dinner with my husband, a day to just relax and regroup. And, by 9am Saturday, it all went to hell.

Lauren woke up early, but with a lovely smile after a day of sleeping off a seizure. Before I could even grab a bowl of cereal, the phone rang – the caregiver scheduled for the day was sick. And, that was the end of my birthday plans. I know – not the end of world, it’s just one more day, it could be worse, do it next week, keep your perspective. @#$%^, well what if I don’t want to? There have just been too many cancelled days and plans and trips, too many “Plan B” days to be grown-up about it anymore. It’s not Lauren’s fault or my husband’s, or mine. It s just part of parenting a child like Lauren. But Lauren is no longer a child – and patience has limits. Sometimes you just want to be like a two-year old, throw a tantrum, stomp your feet. It seems to work for the little tykes!. So, just for one day – I let it get to me. I was glum and ticked and grumpy. I moped around and felt sorry for myself and endured the “what can I do, what can I do” puppy dog face of my husband. Did it help?….No. Instead of starting off a new year feeling empowered, in control of my future, in search of the me that I’ve lost, I just feel old.

Lauren the Music Lover

July 14, 2010

Lauren really loves music, all kinds, all day. She listens to music we’ve downloaded onto her MP3, to the stereo we've piped out onto the deck, to CDs in the bathroom and in the car, and to the cable music stations. The cable stations allow us to address her listening pleasure at a moment’s notice. We never know if she’s going to be in the mood for pop, kid’s songs, gospel, or country. She loves them all. It takes trial and error to figure out what her preference is at any particular moment. She alerts us when we need to change the channel by vocalizing her need for our attention. Recently she was displeased with each of our attempts to change to a station that she’s previously enjoyed. In desperation her caregiver put the Classic Country channel on. Now, I like country too... just not the old twangy kind. Well, classic country is now Lauren’s new love. To me, it’s like nails on a chalkboard. So, we have been enduring the likes of “Okie from Muskogee”, “Drinking My Baby Off My Mind”, Do Wacka Do”, and the true king of the classics – “May the Bird of Paradise Fly Up Your Nose” by the inimitable Little Jimmy Dickens. What sacrifices we make for our children.

Lauren’s MP3 was a great addition to her life. I sit with her at the computer and play the snippets of songs that you can sample before buying a song and I watch her reaction. It’s obvious when she likes a song and when she doesn’t. We then buy the ones she likes and download them. Occasionally she changes her mind or just gets tired of a song. When she lets you know that she is no longer enjoying a song, you have to check and see what song is playing on the MP3. You then take it off her playlist when you can. The system works. And, it gives her not only pleasure, but choice in something, when she has so little real choice or control over anything in her life.

Just recently we’ve found a new use for the MP3. Lauren enjoys someone reading to her. But if the situation or timing isn’t just right, she has to wait for someone to do it. Now, we download books onto her MP3, and she can listen to an expert read to her any time she wants. We download the books for free from a consortium of libraries of which our county library is a member. There are specific titles just for children and young adults on the site. Lauren is listening to one of my own childhood favorites right now - Little Women. Libraries from which you can download audiobooks for free are available all over the country. Contact your local library to find a resource in your area or Google “download audiobook public library” to find resources.

I’m very glad that we have found some things that bring Lauren such joy. And it is lovely to be able to find songs we both enjoy and to share favorite books with her.  She even tolerates me singing along with the CDs in the car. Now, that’s love. I guess I'll just have to deal with the fact that the Classic Country channel will be part of our lives for awhile. I’ll will grit my teeth and simply tolerate the next time that Conway Twitty warbles those poetic lyrics:

                    "You done lost your baby
                     Lost your baby, lost your baby tonight
                     You done lost your baby, honey
                     Baby you just ain`t been treatin` your baby right."

Service Cuts

July 12, 2010

I regret to inform you that there has been a decrease in the reimbursement rate for Medicaid Personal Care Assistant Services as a result of the State of New Jersey’s 2011 Budget.”

This is the first line of a letter that went out to many individuals and families last week. I’m sure many other states are sending out similar letters regarding cuts to services affecting those with developmental disabilities. Here in New Jersey, we have been fortunate not to have experienced many cuts to services and have even had increases in some areas. Thankful that we are, the large majority of families are still struggling to care for family members with disabilities with little or no services. The number of individuals that need services increases every year yet services are remaining basically stagnant. I run into family after family who are desperate to find the care that will enable them to continue to care for their child at home, or who can no longer be the primary caregivers for their children. What can a family do when there are no options, no services to access, no hope that there ever will be? They feel that no one really understands or cares.

The public cares about many things. A Google search on "Lindsey Lohan" has 37,700,000 results. A Google search on "Lebron James" has 20,300,000 results. A Google search of "individuals with developmental disabilities" has 4,000,000 results. Why do two immature, arrogant individuals garner the interest of 58,000,000 people yet the thousands with development disabilities interest so dramatically fewer? I could speculate about the commercialization and celebritization (yes, that is actually a word…I checked.) in our society today. I could complain about government policies and politicians being out of touch. But, you know all about that. And, if you’re the parent of an individual with developmental disabilities what you know most of all, is that the future is a really, really scary place.

This week in New Jersey, individuals with developmental disabilities and their families, who depend on Personal Care Assistant Services, learned that they must struggle even harder to live lives already teetering on the edge of impossibility. What can I tell families who reach out for some shred of hope – “take it day by day’? I think not. Not when each day brings them closer to doom.

Half of a Couple

July 7, 2010

I guess the idea of going through life in pairs started with Noah’s Ark. We seem to be socially programmed from an early age to think of adults as being one-half of a couple. Even if someone is single due to divorce or widowhood, they were once part of a couple, and their identities will forever be linked. How often do we think of someone, who goes through life without at least a series of significant others, as an anomaly, a free spirit, even a curiosity?

As an adult, Lauren too, is one-half of a couple. But for Lauren, the other half of that couple is a caregiver. If Lauren was a typical twenty-four year old, no one would think it at all unusual if she turned up at a barbecue, Christmas party, or wedding, with a significant other. Yet, other than immediate family, people don’t realize that for Lauren, her significant other is a caregiver. She cannot participate in this world without one. However, we unfailingly have to ask if it is OK for Lauren to bring her caregiver along after an invitation arrives. The invitations are not addressed to Lauren and guest, but rather to her parents….and Lauren, if she is invited at all. We have actually been “disinvited” from an informal event, because we said that Lauren was bringing her caregiver.

The majority of people in the world have little or no experience with the disability community. The people who populate the social nooks and crannies of our lives just don’t stop to think of the challenges in Lauren’s life or the parameters within which she is living life as an adult. People don’t give a lot of thought to the fact that for someone like Lauren – life is more about limitations than opportunity, exclusion rather than inclusion.

And so it was with Noah, who filled his boat with a chosen few, couples all, and excluded those who did not fit his very limited criteria. But what about those doomed to be left behind? Their stories must have been a lot more interesting, more dramatic, more tragic, than those that boarded the ship. But we never hear their story. We only hear of those who were asked to walk, two by two, into their future.

A New Doctor

July 1, 2010

In my last post I mentioned that Lauren has a new primary doctor. This became necessary when the former doctor, after repeated requests, could not seem to grasp the concept of the importance of familiarity with Lauren in her care. Much of one’s ability to provide Lauren with any type of care is based on observation. She has a limited ability to communicate her wants and needs and if you are not familiar with her, how would you know if she is behaving typically, appears ill, or is presenting some type of distress? In the former doctor’s practice there were so many doctors that she was seeing a different doctor each time she was in the office. Her primary doctor’s response to my concerns about this was that the doctors were all qualified and that he couldn’t tell his partners how to practice medicine.

So, this week we visited with a new physician I had found by asking for recommendations from several doctors while Lauren was recently in the hospital. Dr. B remained seated throughout our visit in order to be at Lauren’s level as she sat in the wheelchair. He listened to my concerns and issues with Lauren’s care and agreed with me about the necessity of being familiar with Lauren in order to provide appropriate medical care to her. There are only two doctors in this practice and Dr. B assured me that the other physician would appropriately participate in her care.

As we were closing our visit, Dr. B sat close to Lauren and spoke to her like she was a typical twenty-four year old, saying it was nice to meet her, that he would be available for her when she needed him, and made similar caring, conversational comments. He talked to her – not me. He showed her respect. He was kind. I had tears in my eyes.

Why should I be moved when someone is kind to my child? Have I become so used to the opposite that when Lauren is treated in a manner in which we all expect to be treated ourselves, I am surprised? That is so sad. What is also sad is that as we pulled out of the parking lot and I reflected on our visit, I had already begun to prepare myself to be disappointed. This visit was great, but will we be let down by this doctor the next time? I don’t think so, but I’ve learned not to get my hopes up.