March 6, 2007
Madame Chairperson, Ladies and Gentlemen of the Committee,
My name is Sean Magoon. I am from Bennington. I am the parent of and guardian for my son Sean JR. Sean is 36 years old. At the age of 22 he was injured in an automobile accident. He was left a quadriplegic with an acquired brain injury.
Thus began his slow recovery. After months in intensive care and an acute care facility, Sean was moved to a longer term care Rehab center at which he spent 10 years. Even after years of therapy Sean was still dependent on others for all his physical needs.
When funding was approved to move Sean into community based housing I was apprehensive at first, because of his nursing needs. However, I was assured by his case manager that all his needs would be met. While reviewing the budget with her, I noticed a budget item that read “Direct Care Staff $8.00 per hour”. I asked her how she could find people to work for that. She replied “Oh, there’s all kinds of people who will work for that”. She was right; there are ALL kinds of people.
To help my son start a new life, I with the help of many friends and family, built a house next to mine. Sean and another young man with an acquired brain injury moved into it in June of 2003. I will never forget the smiles on their faces the day they moved in. It was a joyous moment for everyone involved.
Then it went all down hill. The revolving door of staff began. Some were excellent, some were good and some were just lazy and shiftless. Some could hardly take care of themselves. There was approximately one week of training and quite often, because of the high turnover, people who had only worked with my son for a few weeks were training the newer staff. There was little or no supervisor. As for the overnight staff there was no supervision at all.
As a result of all this, by November of 2003 my son ended up at Catholic Medical Center with bed sores on each buttock that had turned gangrenous and he had an infection in the bone. The surgeon who operated on my son told me, “I don’t dare to cut any more out”. He spent six more weeks in isolation and on an IV drip. As I sat beside his bed and watched him fight for his life all over again, I vowed that nothing like this would happen again without somebody being held accountable.
Finally, after many months of vacuum pumps and skin grafts, Sean’s wounds healed over. The agency that provided care in the beginning had been fired and the area agency took over the direct care as well as the case management.
Things went reasonably well for quite a while. There was still the revolving door of staff. The agency was trying to do a full time job with part time help.
As time went on I observed that my son was starting to slide downhill again. He was having some obvious medical problems. I asked the direct care staff to contact the nurse trainer to seek advice on how to handle it. His reply to them was that everything was fine, just monitor it.
After a few more weeks of just monitoring it my son was getting worse. I spoke with the nurse trainer and asked him to call a doctor for my son and to work to re-evaluate my son so he could get back on track. He advised me that my son was fine and that I didn’t know what I was talking about, I asked him again to call a doctor. His reply, “I’m not going to call anybody. Your son is fine. I’m not going to do a thing”.
A call to my son’s case manger got me in contact with the “Quality Care Assurance Supervisor”. After registering my complaint with her, she told me that she would talk to the nurse. I never heard from her again.
Three or four days after this, I went to visit my son after work and found him lying in bed with a high fever and a rapidly spreading rash in his saddle, groin area. I drove him to the emergency room and after some initial testing the attending physician told me that I had a “very sick boy on my hands”. He was diagnosed with cellulitis, which is a bacterial infection and if left unchecked, can turn septic in a matter of hours and kill. I have no doubt that if this had manifested itself a few hours later the overnight staff would never have noticed it and my son would have died. After two hour IV drip my son was sent home with a heavy duty antibiotic prescription. This all happened two days before Christmas. While everyone was off enjoying their holidays, we were once again nursing him back to good health. Because of his weakened condition he came down with a secondary viral infection which left him unable to swallow. We spent days by his bedside coaxing him to eat Jello to ward off dehydration.
Through all of this the nurse trainer, case manager and quality care assurance supervisor never came to the house or called to see how Sean was doing.
Finally after a month and half a nurse trainer came through the door. The only reason she was there was to audit the books. I was waiting at the house for her. After corning her it took less than 15 minutes for her to arrange for VNA to work with my son. VNA worked with my son for two months, two-three visits per week to help get him regulated again. All this for a person who was fine!
Because of all this I filed a complaint to the Board of Nursing and Adult Protective Services in January 2006. APS called my son’s case manager and she told them it was a contractual matter. I received a call from APS telling me that I had a contractual problem and to call a different number. He wouldn’t listen to me. He had already made up his mind. Subsequent calls to APS resulted in no one answering the phone or returning phone messages.
I contacted Sean’s case manager again an insisted on an investigator. They finally relented and assigned their own complaint investigator, whose husband also works for the same area agency, to do the task. Keep in mind all these people share the same office space. She asked all the right questions to get the answers she wanted and quess what? There was no neglect.
An appeal to the CEO of the area agency for an independent investigation resulted in a denial. I was referred to the hearing process to the commissioner. A meeting was arranged, and the result of that meeting was a “sentinel investigation”. This boiled down to a meeting with the credentialed class at the agency. The result of this investigation was that it was all a miscommunication. It was also suggested that a stretcher van be provided so my son could get out more.
My son needed a doctor not a stretcher van. Following this logic I would assume that the next step down their ladder of quality care would be a hearse. “OH, he died of natural causes. He was very fragile you know”
A meeting with the Governor was arranged and I asked him to direct APS to respond to me in writing and State what their criteria is to open an investigation and explain why they didn’t.
As a result of this I received a letter from the director of Health and Human Services. Her response was that the area agency’s investigator was highly regarded in her field and that APS, after consulting with their attorney, decided that this case didn’t meet the criteria.
It’s quite comforting to know that APS, who are supposed to be protecting our young men and women, has to consult with an attorney before they decide to investigate. They should be renamed “Agency Protective Services”.
Now to the Board of Nursing. In July of 2006, I called the complaint investigator to see how his investigation was going. He told me that he hadn’t started it yet and wouldn’t be until fall or late fall. I asked if he was really going to investigate or if he was just going to call the nurse and ask him if he did it. He assured me that they take all complaints seriously and that he would call me, interview me and the other witnesses.
I called him again in January of 2007 to get an update and he told me that it was a done deal already. When I reminded him of what he said to me in July there was silence for a moment and he replied “Oh, we had enough paper here to go by”. The complaint was dismissed without any investigation.
It was at this [point] that I realized that my son and other clients in the DDS and ABD programs have absolutely no protection at all. They have no one to advocate for them when they have a complaint. The only thing they will advocate for is more money.
I found that the system is set up to protect the system. It is designed to discourage complaints. Any information you ask for is secret or confidential. Secrets never protected any innocent person.
As a result of my experience I believe the following things need to be done.
1- Enact legislation to prohibit case management and quality care supervisors from having any connection at all to the service care provider. By continuing with the present system you effectively silence clients who have no one else to advocate for them. Any complaint they make will never see the light of day.
2- Enact legislation to require APS to be more open. They should be required to respond in writing and to document every complaint filed. Under the present system, they only document a finding of fault. Until they do this we will never know how many complaints are never investigated. Remember they don’t have to tell you anything. They are accountable to no one. We need an agency that protects live people not dead ones.
3- Increase the funding. If we feel that it is our obligation to care for people with disabilities then it is our obligation to see that they have the resources to keep them healthy, safe, secure and to be active members of our communities, if they so desire. If we expect committed people to care for our loved ones, we need to commit to them a wage that reflects the high regard we have for those who give excellent care.
Picture yourselves, if you can, lying in a bed unable to move and totally dependent on others to turn you, scratch your head and assist you in all of your most personal functions. Every time the door opens it’s somebody different. People, who don’t know your needs, don’t understand a word your saying. Some people, knowing that you were soiled, would leave you for the next shift to clean. Would you feel secure and safe? Picture this year after year. We can’t be bottom fishing all the time and expect to land tuna.
A scenario like this could be you or me in a heartbeat. My son went from calling me Dad to Daddy overnight. My adult son was gone and I had my little boy again. My best friend in life, since childhood, suffered a debilitating stroke last year. He was 54 years old. Every one of us is standing on the edge of that precipice. Do we want to condemn ourselves or loved ones to a system that allows just enough to exist?
Through my families advocacy, support from friends and complete strangers and the desire of the area agency to be rid of him, we moved Sean up the ladder of quality care, not the nursing home that was intimated a few times, to a care provider that employs full time staff with benefits and 2to3 nursing visits per week. His health has improved considerably and his desire to get out of bed and do something is refreshing. He takes many trips out into the community. Sitting upright by the way.
I recall as a 19 year old Marine Recruit, my drill instructor saying that wherever you go or whatever you do in life there will always be that 10 percent that screw it up for everyone. He was right.
Because of the arrogance of a few and the misguided, misplaced loyalty of otherwise good people the care delivery system is failing. One has to look no further than recent history to see what happens when people look the other way. The Catholic Church tried to pretend abuse wasn’t happening. They looked the other way, moved people around and covered up for the bad ones. Look what happened as a result of that attitude.
In closing, I would like to ask the legislature, Governor and good citizens of NH to stand up and say “We need to fix this system so that our less fortunate brothers and sisters can enjoy the NH life as so many of us do”.
Thank you for listening
Sean P Magoon