Month: May 2015

I have always looked forward to making new friends. As a handicapped person, making friends who I can actually converse with is a difficult process since many of my friends have severe disabilities affecting speech and language, and attempts to keep friendships with non-handicapped friends has been frustrating. I have two handicapped friends who are able to converse with me at my level; however, after seeing what these two close friends have been going through over the past several years, I am now almost afraid to meet new people, and my trust and gratitude for the agencies which I have believed are there to help me throughout life has been greatly challenged. I have changed the names of these friends in order to tell their stories so that people will be aware of the difficulties facing handicapped people, and in particular, so that they will be aware of the difficulties that handicapped people face in spite of the social services agencies created to assist and protect the disabled.

I met Sarah about five years ago in a day program. We hit it off right away because we could talk together, and it seems that we had a lot in common. During the time that I have known her, Sarah has lived in approximately five different group homes. She now lives in a nursing home. Sarah had some problems in the first two group homes at the beginning of our friendship. In one home, she had a roommate who stole things from her. As a result of this continued issue, Sarah requested to move from this home. Her agency worker then had to find her a new home and take care of paperwork in order for this to happen. At the next group home, Sarah was well cared for, but she was the only young person there. There was no one at her skill level to talk to or do things with. Also, she felt that the owner of the group home was too strict and did not want her to go out to visit friends, or she was required to come home too early in Sarah’s opinion. After awhile, Sarah requested to leave this home. Had she known how relatively minor these problems were compared to what she would face in the future, Sarah never would have left the second home.

When we saw Sarah while a young man whom we shall call Bryan was taking care of her, her hair was shiny and well kept. She weighed 103 pounds. She was working toward a GED with the facilitator of her Tailor Day Program, and she regularly attended wheelchair dance classes where she had many friends. She attended church often and actively worked in an organization for disabled people.

Shortly after she left the home where Bryan worked for reasons stated above, we saw a different Sarah. Her hair was dirty and unkempt. Sadly, she was wearing diapers because the owner of the new group home did not want to take her to the bathroom. The usually urine soaked diapers were clearly visible through her clothing. By accident the rods in Sarah’s back were broken due to mishandling. These rods, which many physically handicapped people have, provide the disabled person with the ability to sit up better, and allow for better ability to breathe and digest food, among other benefits. The broken rods poke Sarah in the back, causing much pain. An orthopedic surgeon scheduled surgery to repair the rods. Suddenly, blood clots were discovered in a leg after Sarah complained of pain in her leg. She had to take blood thinners; consequently, the surgery needed to be postponed. After the blood clots went away, surgery was again scheduled. The blood clot returned. Surgery was postponed again.

During the time that Sarah lived in this group home, we received many anguished calls from her when she would cry in pain, stating that the owner of the group home would not take her to the doctor for issues such as urinary tract infections, nor would she fill the prescriptions in a timely manner. When Sarah was hungry, she was given crackers to eat in bed while she lay in a reclining position, which allowed crumbs to enter her windpipe. She began coughing up blood and had to go to the emergency room. On some of these occasions, the owner of the group home would not take her to the emergency room.

Whenever we visited Sarah at this home, we brought her gifts and money to make her life easier. We brought her lots of DVDs to borrow. We also gave her a TV because she usually just lay in bed all day with nothing to do. In this home, there were no group activities, and the family television was not shared with the clients. Frequently and suspiciously, the money we gave Sarah disappeared. She communicated to us how helpless she felt to protect her belongings or to help herself with getting to appointments. MTS cancelled her eligibility after she missed three pick-ups because the owner of the home did not get her ready in time for appointments.

As this manner of neglect and possible abuse continued at this home, Sarah began begging her agency worker to find her a new group home, but the worker, possibly annoyed due to the number of moves requested by Sarah, stated that there were no homes available. Sarah was kept at this home for years while regularly reporting incidents of neglect. My mom called several times to discuss this issue with Sarah’s case worker, but the worker blocked my mom from communications, citing the Hippa law as an excuse to escape advocacy for Sarah. She did tell my mom that Sarah has “behavior” problems, so I guess that trying to help oneself is inappropriate behavior.

At one point, Sarah was placed in a sort of foster home with a couple who did not seem to know how to take care of a severely physically disabled person. We heard the man yelling at Sarah to hang up the phone when she was speaking to us, and the woman of the home actually asked my mom to take care of Sarah on weekends so that they could go sailing. My mom worked 60-hour weeks at the time and had a full time job taking care of me, so she said that she would take Sarah on some Saturdays or Sundays but that she could not do it every weekend. The lady was mad that my mother would not help her more so that she could go sailing. After awhile, the couple decided that this was not the life for them, and Sarah was removed from that home, but incredibly, the case worker placed her back with the neglectful group home described above. We could not believe it! After all of the requests to leave that home and with good reasons stated, that case worker put her back in harm’s way!

Sarah finally left this group home, but not due to any diligent efforts of the agency worker. She left in an ambulance, which she had to call for herself due to an incident of coughing up blood. The paramedics found her on the floor. According to a report filed by the paramedics, the owner of the group home actually tried to send them away, but luckily, the paramedics insisted that they did receive a call from that home, and they persisted in finding Sarah.

She never had to go back to this group home, and after being discharged from the hospital, Sarah was “temporarily” placed in a nursing home until her health improved. There were blood clots to clear, the coughing up blood incidents to prevent, and she needed to lose the weight that she had gained while living in that home. However, they must have lost the key because Sarah is still in this nursing home almost three years later. Co-residents of this nursing home are all elderly and extremely ill, or experiencing dementia. So far, at least two of her roommates have died. This is not an age-appropriate facility for Sarah to live in for such a long time. While living there, Sarah developed a huge sore on her hip, which would not heal for a very long time. Because of this sore, she could no longer go out in the community. While health goals for Sarah state that she is to be encouraged to make healthy choices for eating, Sarah has continued to gain more weight and now weighs over 160 pounds. She is a short person, and this is an incredible amount for her to weigh when she was only 103 pounds a short time ago. When we went to visit her last, there were bags of bagels and cookies, and boxes of crackers within arm’s reach of Sarah. Six packs of soda lined the wall of her room, and while we were there, an attendant came in to bring a snack for Sarah, which was a bag of graham crackers. It is not difficult to figure out how Sarah continues to gain weight on this healthy eating program at this nursing home.

Sarah has been trying to get back her belongings which were left at the previous group home when she was whisked away to safety by the paramedics. She has called the home many times, and the woman tells Sarah that she has no right to call there any more. A friend went to the home and brought back a box of Sarah’s belongings, but things were missing, some of them pieces of jewelry that we bought for Sarah, her phone card, and a camera which her sister had bought for her. The woman continued to say that there was nothing left of Sarah’s at this home. My mom wrote a letter demanding the return of Sarah’s possessions and copied an attorney. Amazingly, another box or bag of belongings showed up at the nursing home. Still, important items are missing, such as the camera, her computer, part of her jewelry box, and the television, which the lady denies having in the home. I wonder if the TV got up and walked out of the house by itself.

So, I have questions. Who is coordinating Sarah’s care? Or rather, who is not coordinating her care? After all of this time, the much-needed back surgery has not happened, and it appears (as my mom discovered at a recent meeting at the nursing home) that it is not going to happen because no one at the nursing home is even aware that the surgery was ever scheduled—even though Sarah asks about this surgery frequently, and my mom has spoken with a social worker at the nursing home about it and also with Sarah’s previous agency case worker. How can it be that at the recent meeting when my mom inquired about the back surgery, no one knew that she needed one or that one was ever scheduled? Sarah is given pain medication for her back pain, but nothing will be done to repair the rods in her back, which are the cause of the pain. The doctor there has done nothing much for Sarah’s benefit. However, a nurse there did tell my mom that Sarah has osteoporosis, but could not tell my mom if she was receiving medications or treatment for this condition, which she is much too young to have. Such care she is receiving at this “care” facility!

I met the friend who we will call Mark at another adult day program. Neither of us stayed at that program due to many, many more problems, which is an entirely different article altogether. Mark can walk and speak well. I thought I had found someone to hang with, but within a very short time, he told me that he needed to move out of his group home because the owner there yelled at him, poked him in the chest while yelling, and pounded on his bedroom door in the middle of the night. I actually heard the pounding, cursing, and yelling one time over the phone. Like Sarah, Mark’s agency worker could not, or would not, find him a new home. When Mark complained to the worker’s supervisor, the supervisor informed him that his case worker deliberately set his issues aside because Mark called her too often. So, it is ok to ignore the plight of a client if they annoy the worker? How ethical and diligent of that worker—and of the supervisor who knows about the issue!

During his young life, Mark has been the victim of prenatal drug abuse by his mother. He grew up in the foster care system where he was once chained to his bed for his misbehavior and witnessed his foster sister beaten. When one of his foster parents got a divorce, he tried to follow the foster father to his new home, but the man said that he had no room for Mark at his new place. Mark was suddenly alone and thrust into a homeless situation. It seems like his entire life has been a series of stressful situations. All he has ever wanted is a family.

With the help of my family and a wonderful former elementary school teacher, Mark was able to get out of the recent group home with the yelling, cursing owner. Mark now lives with the teacher and her family until the agency worker finds him a new place. Who knows how long that will be? Like Sarah, with our help, Mark had to rescue his belongings from the group home after he left. He was being transported to a homeless facility when his former teacher saved him and brought him to her home. Why are the non-professionals responsible for doing the work of the professionals? Mark is not safe from stress yet. Now it appears that he is being punished for advocating for himself. Someone seems to be informing possible group home owners about Mark, casting negative impressions about him. As his former teacher says, “it must be written in The Tribune . . . . “ But isn’t spreading gossip and rumors about clients a breach of ethics for both the owners of group homes and social workers? They are not supposed to disclose information or make up information.

More questions:

Who is running these homes?
Are they caring, trained people, or are they doing it just for the money?
Are the funding agencies so over-worked that they must leave their handicapped clients in harm’s way for long periods of time?
Who supervises the funding agencies?
Who supervises the case workers?
Who supervises the supervisors when they look away from negligent or incompetent service?
How do disabled people find the right place to live where they will be cared for?
I understand that handicapped people are not always easy to work with and care for. They can be annoying. They may call too often for assistance. They may want to move frequently since group homes will have issues, and after all, everyone wants to be treated well, and everyone wants to be happy. Doesn’t the Constitution guarantee all citizens the right to pursuit of happiness? We are people who need and have a right to ask for help because the State of California provides money for the purpose of helping us—the handicapped people. Without us, social service agencies and workers would have no jobs.

Should the disabled person stay in a bad situation and not ask for help? Of course not!

Sarah and Mark have dreams, just like every one else. Sarah still wants to finish school. Mark wants to go to college. Sarah has dreams of falling in love and having a relationship. Mark wants a family. Both Sarah and Mark wish that my mother were their mother.

I have dreams too. When my parents are no longer able to care for me, I want to live in a nice home where I will be cared for and where I can thrive, where I can grow socially and intellectually, maintaining good health—where I can have fun. I dream that friends and family members will come by my house and pick me up to go hang out.

As I see the stressful and scary situations of my friends who have no parents who help them, I am grateful for my family and hope I will never be in the situations of Mark and Sarah.

If all goes well, hopefully, I will not have to live in a group home. I will try to go with one of the agencies that help people to get their own place and hire and manage their own care providers.

If it were not for social services and the money provided for handicapped people, many disabled adults would be homeless. This is a positive thing for us. However, more monitoring and supervising is needed for these group homes, adult day programs, and nursing homes.

I wonder what my future holds. I hope someone will listen if one day I ask for help.

I have a story for you. I joined an adult day program, which I was in only for a week. Toward the end of that week, one day I met a new job coach. On Friday of that week, our group went bowling. It was fun going bowling, but I was getting thirsty so after bowling, I asked the coach if I could go into Starbucks. She said I could go to Starbucks and asked if I minded if she went to Vons while I and the other two clients went to Starbucks. and I said sure, but I didn’t know that according to program policy, and I believe according to the law, that we were not to be left alone or unsupervised since we were in the care of that person. I did not know this point of the law, but a good friend of mine told me that later, and so did my mother.

There were three of us, so another client and I bought our drinks at Starbucks. Then we had to cross this busy street to go back to Vons to meet the job coach. It was both a street and a parking lot as cars were backing out, but also driving on streets. One of the clients was drinking his coffee in the middle of the street. He was oblivious to the traffic. We (another client and I) told him to keep walking. He kept drinking anyway. Then I said, “ Come here! Give me your drink!” He said, “What?” So, I firmly repeated for him to give me his drink again. Then he finally walked across the busy street.

When we finally met up with the coach, I told her that what happened.

It was a funny story as my other client friend and I told it to my parents one night at dinner. But I knew as soon as we started across that busy street in my rickity walker that it was actually a dangerous situation. Handicapped clients should never be left alone without a coach if they are not entirely capable of crossing busy streets safely.

This is my story, which contains a lesson to be learned for people with disabilities or for any child.

A few days later we invited my new friend from the program (not the one who was misbehaving) over for dinner. We told my mom the story. We also talked to the director of the program who asked the job coach if this was true. She lied and said that our story wasn’t true. I think she should have been fired because she broke a rule of the adult program, but also, by denying what we said, she was basically calling my friend and I liars. We had no reason to make up this story, which we innocently told to my parents, not knowing that my mom would probably do something about it. We did not lie, and that job coach did not do her job, and she actually endangered us by leaving us alone while she did a personal errand at Vons on work time.

That job coach is still employed at that adult day program, and my friend and I no longer attend that program. He is finding his own jobs, and my mom and I are taking our time looking for a better program with integrity.

Most people would not envy the life of a handicapped person.  Our lives are not glamorous. We use awkward equipment, such as walkers and wheelchairs, just to get around–no spike heels for this girl.  Some people need a lift called a hoyer to get out of bed or to use the bathroom. Many of us will never go on a real date or have children or grandchildren.  Many will not travel since much of the world has no accessibility for the disabled.

Although most people would not trade their lives for that of a handicapped person, amazingly, some people do not mind taking advantage of the nice services provided by the Americans with Disabilities Act (ADA) or those ideas created by generous people or agencies for the benefit of the disabled in order to make our lives a little better.  For instance, on more than one occasion, my mom and I have gone somewhere such as the beach at sunset time when we were unable to park in a handicapped spot because those spots reserved for handicapped people were full of cars occupied by people who did not appear to have placards.  We actually had to leave on one occasion after driving around and around the parking lot because no spot became available, and thoughtless people were taking up the spots reserved for people like me–a handicapped person who has difficulty walking. These trespassers, intruders, or whatever, thought that because their engines were running, and they were still in their cars, that they were not breaking the law. But because of them, the more entitled ones, I, the actual handicapped person, had to leave the parking lot without seeing the sunset.

Another example of misuse of services for the handicapped is at amusement parks.  Now the lines for handicapped accessibility are longer than the general lines at Disneyland and other places, and I hear that they are getting rid of the handicap entrance because of misuse of  the service intended to help people who cannot stand or who cannot hop on to a ride without the car stopping.  At Sea World many of the areas set aside for wheelchairs are taken up by families with babies in strollers.  I have also seen someone get up and walk away from his wheelchair–true fact!  I saw it happen at the Colors of the Wind show at Disneyland.  No one should do this!   I was practically trampled as entire families ran in front of me to get to the few benches set aside for the handicapped at that program. One person was approximately a 30-year old able-bodied man who took my seat.

I have always wanted a service dog, but I am patiently waiting until things are ready with my family so that we can take care of one. Having a dog is a lot of responsibility, and training a service dog is a huge commitment. I have pages of pros and cons carefully recorded as I try to do the right thing about getting a service dog.  It bothers me to know that many people buy the service dog vests and badges so that they can take their pets with them wherever they go.  You can easily buy them online.  But there is a difference between a dog who is a pet and an appropriately trained service dog meant for someone who has applied and qualified to receive one.  Properly trained dogs do not bark in frequently see untrained dogs wearing service dog vests.  It is not fair.  It is not right!

Finally, a situation which I recently noticed but which I consider to be almost a scam is the growing abuse of concert ticket resales.  I have waited for years to see Taylor Swift, but when we went online recently to buy tickets, we found out that tickets sold out in ten minutes while resale websites scooped up countless tickets in order to double and triple the prices with one catch: no tickets were earmarked as handicapped accessible. We spent hours combing every resale website.  Am I going to be able to go to this concert?  Do any of these people care?

Disabled people know that a lot of this world is inaccessible to them, but why do those people who have the good fortune to be able to walk and hop over railings need to take away the few things given to the handicapped. It’s easy as pie–like taking candy from a baby.

Everyone!

I am   handicapped.   Many of my friends are  handicapped.    I have  met many wonderful people during my 25 years.  I have met wonderfully-hearted people like teachers, aides, assistants, and people who smile when passing by, and I just know that they are good people.

But then, I noticed those individuals  who blatantly stare at us, the handicapped, because we are different. Worse yet, are parents who allow their children to stare at us without even telling their children that it is impolite to stare at people.   My mom taught me that basic manner; her mom taught it to her. One mother at a store criticized her daughter for asking me why I am in a wheelchair.   I wanted the woman to know, and I told her, that the question was fine–not a problem. I would much rather explain what happened than be the subject of a rude, cold stare.   I have a lot to learn yet in my life due to cerebral palsy, but many supposed “normal” people have much to learn about human decency.

I accept that I am handicapped, but I am not protected from the judgments of ignorant people who think they are better.  Even among the handicapped there are categories of higher and lower, just like any other population.  I find that I must be patient with my own friends, such as those who cannot speak.  I feel so badly when they cannot answer me verbally or in a text, and I want to simply converse with them, but sadly, they cannot tell me what they mean.  I want to say to then, “Please get a Dina-box,” but then I realize that some of my friends do not even have the use of their hands with which to type.  We must all be patient and compassionate.  We all have a lot to learn–handicapped or not.  There are more ways to be handicapped than the obvious physical and mental impairments which qualify a a person for special programs.

We, the handicapped, often wish we were not–handicapped.  Sometimes we want to just be able to do things like others without having to wait for help, such as someone to dress us and then drive us to where we want to go.  I wish I could write my own blog without the help of my mom who is often busy with her own things.  I do try, but even Dragon Dictate doesn’t always work.  It is not always funny to read what I think I dictated.  I wish I could go out and catch a bus to meet with friends, but I know I am not ready yet since safety comes first.  I know I must be patient.

My biggest dream is that my friends and family will call me up and say, “Let’s hang out today–” that they would scoop me up and take me out for a fun event.  I want to be included.  The handicapped want to be included.  It’s hard to always wait.

Hopes and dreams–all people have them.

 

 

 

 

My family decided to use our timeshare and go for a short ski trip while my step-sister was home for one week.  We picked my step-sister Mindy up at the airport on Friday. She got in late. She ate leftover soup for dinner. We had two kinds of soup, but Mindy really liked the acorn squash soup. We ate soup for breakfast again the next morning. Mindy finished the acorn soup. I love having Mindy home.

On Saturday we hung around a lot and planned our ski trip to Big Bear. My step-dad Jeffie surfed in the morning.

Sunday morning was frantic as Mom tried to give me a shower and pack all of the stuff that she should have packed yesterday. She kept asking over and over why she didn’t do it yesterday. It was raining, and we had to drive up that mountain.

There was no need to worry because the ride was safe. There were sudden clearings in the sky, which made the canyons look mystical. The clouds were like angel hair. We saw a huge double rainbow.

Our timeshare condo was great! Mindy went snowboarding the first day while we hung out. Mom really wanted to ski but was afraid after so many years had gone by. We talked and talked about it.

The next day took forever for us to get ready. Mindy had ridden up the chair lift with an instructor from the adapted ski school. He said that I should go skiing too. We couldn’t decide if my mom and I should go skiing.

It was 1:00 pm–past half-day time of skiing when we knew it was decision time. My mom said, “O.k., Mindy. Let’s go.” They rented skis and bought tickets, and she had a great day!

Jeff and I went to the ski school to see about lessons for me, but it turns out that a tour bus of handicapped people arrived that day, and they were all booked up.

So, how do I feel about that outcome? Actually, it was o.k. I was excited about the prospect of skiing, but I knew not to count on it. I had a great time just being at the ski lodge, drinking hot chocolate and watching Mindy snowboard and Mom ski. I took a video of them. And I learned a lesson: If I want to do something like take an adapted ski lesson, I should make a reservation in advance.

So, if life hands you lemons, make some lemonade, or go have some hot chocolate.

Most people have problems with friendships at one time or another throughout their lives.  Friends (and family) can be inseparable, integral in our lives. Their drama can cause conflict and anxiety in our lives as well.

I’ve always been thankful for the friends and family in my life, but the conflict and drama and loneliness often claim the day. My family and friends love me, but those of my age group seem to have decided that my place is to sit next to my parents and their middle-aged friends for all of my life rather than to experience situations of entertainment and socializing of age-appropriate young adults.  I am not sure if my friends and family peers are afraid to take the responsibility of taking me out to places, or if (and I hope not) they just don’t want to be bothered because I am handicapped, but nonetheless, I need to experience all of the fun things and hanging-out times, which young people do and which cause growth and  change in life. Maybe hanging out with a handicapped person isn’t so cool, but we do have the same feelings and needs for friendship and fun as everyone else.  I always see programs on TV where the handicapped person is included with the teenage and young adult outings, but this has not been the case for me–ever. No one except for people my parents’ age will take a chance to come and get me and include me in their fun plans.  It’s lonely.

 

I am CP Girl though that is obviously not my real name. I was born two-and-a half months premature and suffered brain damage as a result of that complication. My twin sister died, and that was the beginning of my issues of dealing with Cerebral Palsy and dealing with the world as it relates to CP. Welcome to Blog No. 1. Feel free to comment on anything that I write. I welcome the input as long as it is kindly stated, and I am happy to provide any advice that I have regarding any issues you may have as well.

I am so sad that my sister died. I wonder what life would have been like with her in this world.

Dear CP Girl Blog Readers:

I am pleased to introduce this new blog which will supplement my former blog addresses:  myprettymuchnormalday.blog.com and disabledpersonsstory.blog.com. These sites were frequently disabled or under construction, making it difficult for readers to access my articles and stories. The previous addresses are still working and available, as well as this blog address.  Please keep reading, commenting, and sharing the issues regarding disabled people.  We need lawmakers and advocates to become aware of the need for urgent and necessary changes in the laws to protect handicapped or disabled people.

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