Rhode Island Special Needs Emergency Registry for Rhode Islanders with Disabilities, Chronic Conditions, and Special Healthcare Needs. Check with your local Emergency Management Agency to see if one is available for you in your area.
I saw a video on the TODAY SHOW this morning and it made me remember a registry I used last year. I forget how I heard of it but I had already done something similar with our city fire department. Awhile ago, I started wondering what would happen if there was a crisis in our home and the people who communicate could not for some reason -- how would Willie react to the situation and how would the rescue personnel react to him!! What if Will decided to hide out in a closet or under a bed - if the rescuers called, he would not answer. Not the best situation with the best end result. So I contacted our city fire dispatch with Will's information: birthdate, address, brief description, diagnosis, the fact he is non-verbal, medicines he takes, etc. They said they could put it into their system & have it show up if a call came to go to our home.
Then about a year later, I received notice about a Special Needs Emergency Registry and immediately filled it out, which I was able to do online. I filled it out for Will and my mom, since she falls under this category. The form registers mobility aids, life support systems, what type of disability is involved, language spoken, I think it is a great help to have this information available since it allows first responders to be able to plan on what they need to do, when they get to a home. I would advise everyone to take advantage of this, if it is available. If not, then talk to your local rescue and ask them how to get your loved ones information into their system.
You may need to copy & paste the link:
http://todayhealth.today.msnbc.msn.com/_news/2012/03/01/10543990-autism-rescue-firefighter-teaches-how-to-help-autistic-people-in-emergencies
Wheelchair Accessible Taxi
Starting this April 2012, local taxi companies purchased these taxis with the support from the Federal Transit Administration's New Freedom program, along with local support from the Rhode Island Public Transit Authority and The Rhode Island Division of Public Utilities and Carriers. Seventeen communities will be served by these.
All you have to do is call the taxi company, there are several, or hail one on the street. You need to call in advance if the return trip is outside the cab's licensed territory. Operating hours and number of available taxis are limited. so it really is best to call in advance.
The taxis are modified vans using a rear ramp leading to a lowered floor for wheelchair and scooter passengers. Drivers are trained to handle and secure mobility devices. There is also seating for 4 additional passengers including personal care attendants who pay an additional rate. Luggage and fuel surcharges may apply.
Mileage rates are based on standard taxi rates. There are NO discounts. Their example shows approximately $12 for a 5 mile trip. So if you have any questions, if you don't know if the vehicles are in your area, call 401-781-9400. If you live in RI and have problems with getting the names, phone numbers, and locations served just email me and I will get the information to you.
There are taxis on Aquidneck Island and on the 'mainland' including service to T.F.Green Airport.
Mom's Kidney Dialysis Center - A Great Big Shout Out!
Mom's memory is really starting to decline, rather quickly it seems. As each day goes by, she asks more questions about where she is, whose furniture is this, how many children I have (she thought I had a daughter named Linda), how does she get dressed - you get the picture. But one thing always stands out on dialysis days, she loves where she goes. There is a center in East Providence which is part of the American Renal Association (ARA). She has been going there from the beginning - last December, when she started in rehab. Although leery at the time (her mental status was not good due to another UTI) and afraid, she has come to really appreciate the center. At 85, starting something new is not easy and always not appreciated, especially when you are sick and people are sticking needles in you or working from a chest catheter/port, but the people there have been wonderful and understanding.
As she kept going, 3 times a week, they have treated her kindly and with respect. Everyone says 'hello' when you get there, starting with people/patients in the waiting area. They have catered to her mental and physical needs with patience. Mom tells me they always answer her questions, have gotten her through all the needles and telling her how the machine works, helped her with her cell phone when needed, and have always followed through on filling me in on what is going on. Mom has seen how they talk to me with anything I need to know, tests that need to be done, doctors I should talk to regarding any issues that they see; the staff does this with more kindness and respect. The social worker there is always ready to lend an ear and give us direction, tell us about services available. The dietitian has given us numerous handouts regarding diet and how her bloodwork 'report card' comes out once a month. Everyone seems to work well together.
People can visit during dialysis time - I spent some visiting in the beginning and saw the staff move from one person to another talking and laughing, sometimes sitting for a time with someone on the machine. They read the paper together, talk recipes, wave to others in another row. Even the patients there get to know each other and keep each other posted on what is happening (some have been there for years). As one younger person received a kidney, everyone else got to hear about how he was doing and celebrate. When mom was going to get a fistula, a woman who had one came over to show hers and let mom feel her arm. She explained how it was done and how it feels in the arm.
At one point, after mentioning in the beginning that we might want to transfer to another clinic in the same group closer to home, we were told of an opening there. Mom declined, stating that she has gotten to know everyone and feels comfortable there; she likes it there and doesn't want to be anywhere else. Why change??
I am sure there are other clinics out there that handle themselves and their patients in similar ways. These are great people doing emotionally tough jobs with a smile for their patients every time they arrive. These people deserve all our respect and a great big 'thank you' because these patients do not always have a good outcome, like a kidney transplant. To their credit, they do their jobs with a smile and always with a positive attitude.
PACE:
I saw a small bus parked in a local parking lot with colorful pictures of elderly people on it, the word "PACE", and the description that the organization 'preserves and sustains the independence of elders who want to stay in the community'. In other words, they help seniors stay in their homes.
The local RI PACE is a member of the National PACE Association. Consumer information about the National PACE Association can be found at Pace4you.org.
Basically they provide in-home services so that a loved one need not be placed in a nursing home, helping with your elder care. As the PACE4You page puts it:
PACE is a different kind of care
It doesn’t have to be this way. Thousands of families across America have found a different and better kind of care for their aging loved ones – PACE. And what these PACE families have experienced is a program that provides and coordinates all the types of care your loved one needs, so you don’t have to place them in a nursing home. This care includes:
● Medical care ● Personal care
● Rehabilitation ● Social interaction
● Medications ● And even transportation
All in one place so an elderly parent can live at home.
PACE works with an interdisciplinary team to get the right assistance not only for your senior but for the whole family. PACE offers Medicare Part D prescription drug coverage. They provide services in the community, support family caregivers, they are sponsored by the healthcare professionals who treat you, preventive care is encouraged and covered, provide transportation services, and comprehensive care.
Who can enroll?? "You can join PACE if you meet the following conditions:
*You are 55 years old or older.
•You live in the service area of a PACE organization.
•You are certified by the state in which you live as meeting the need for the nursing home level of care.
•You are able to live safely in the community with the help of PACE services at the time you enroll."
It is definitely something to check out if you are considering what to do with an elderly family member. Check out the "PACE Finder" tab at the right top page of the PACE4You webpage to see if there is an organization in your area.
Special Needs Emergency Registry:
I received a letter from the RI Dept of Health & RI Special Needs Emergency Registry wanting to update the information in the system on Willie and mom, which I did. There was no way to update the information online, I had to call.
Included with the letter was a brochure from FEMA giving you ideas on what to do in the event of an emergency. Locally, they suggested calling our electric supplier to have a "Notice of Life-Sustaining Equipment" placed on your account if someone uses life-sustaining medical equipment. Also place contact numbers of those equipment companies and/or home health aides in a prominent location since these are some of the first calls you should make after a disaster.
The FEMA brochure gives an overview of what to have ready such as getting a kit of emergency supplies, making a plan of what to do, be informed of what might happen and getting involved in preparing your community. Basic reading for all of us.
Make sure you contact your state and/or local government agency to see what they suggest for local plans and contact names and numbers should an emergency arise. Make sure you register a loved one for the Emergency Needs program if you have one -- if not make a strong suggestion that one be started.
CurrentCare:
We came across forms to sign up for 'currentcareri' in our doctor's office. The idea behind it is to have your medical information in one place so if, and when, you go to different doctors or to the emergency room the doctors have all your information at hand so they can better treat you, they get it electronically. I love the concept and have been looking for something like this for awhile.
You can sign up by filling out the short application putting it in the mail or sign up online. I TRIED to go the online route. I was going to sign all 5 of us up and my mom. All you need is basic information such as name, address, phone number, birthdate, NO Social Security number except that you have to add the first and last numbers. It should take a few minutes to do. I tried sooooo many times and could not do it; I would get the 'response' saying that my information does not match what is in the system. So I called the phone number on the brochure. All I was told by the person answering was that "You must be doing something wrong". She did ask if we had moved within a year or so - no. "Well you must be doing something wrong." OK. I tried on different days - same result. So I did it the old fashioned way -- take pen to paper and snail mailed it.
As I said, I love the concept and hope others take advantage of it; I can't see why it would be a detriment although someone did mention that those people seeing mental health doctors/clinics may not want the information out there. Understandable but again, if you get into a medical emergency and there is no one there with you to talk for you, all your prescriptions are there and can save you from any conflicts and possible medical complications.
I just hope that it is easier to sign up online - maybe I was doing something wrong, having one of my 'senior moment' DAYS. I also hope that the people on the other end of the phone at 'currentcare' can learn to be more helpful instead of just telling me "You must be doing something wrong". Take the time to talk to the person, they are the first line of company service - if I thought the people who answer the phone are the same ones overseeing the system itself, I would think twice. Instead I'm willing to chalk it up to a new program where everyone is learning.
Well the paperwork I sent in came back with a letter stating that the forms did not have an 'authenticator signiture'. This is another name for your physician's office (IF they are a Currentcare partner) or notary. NOWHERE on the form is this notated. So I had to go out and get the forms signed. Our primary care doctor didn't know anything about this and even thought he did not have to sign it. I got lucky by talking to a phlebotomist the other day when I went for blood work and she said she could sign it too since they are promoting the program. I filled her in on my problems with it to see if she had any insight but she didn't. I am not thrilled by the way this is being handled - with very little instruction. This will be my last try - hope it works.
If there is anyone out there who has done this and succeeded, please let me know.
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