BLOG #8: UNEXPECTED DISCOVERIES

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.