Archive for January, 2011
This is all Ed Roberts’ fault!
Ed Roberts was a civil rights leader for people with disabilities who was called a “prophet for independence.” He challenged each of us to be extraordinary.
This could be Chris Brogan’s fault!
Chris Brogan is a socially conscious social media guru with thousands of readers. He recently challenged his readers to use the oldest form of exchange–barter. Bartering in a Digital Age is about finding a way to get the services or goods you need. No excuses. If you can’t afford or don’t know how to do something, barter.
It’s the MN DD Planning Council’s fault!
The Minnesota Governor’s Developmental Disabilities Planning Council has been documenting the paradigm pioneers in the History of People with Disabilities for over a decade. Parallels in Time I and Parallels in Time II.
Since most history books ignore people with disabilities, these are important historical videos.
Okay, it’s my own fault!
I contacted the MN DD Planning Council and asked if any of their videos were in shorter segments. Dr. Colleen Wieck, the director said she “wished,” but there were no resources to edit or transfer the videos to YouTube.
I knew blog readers want short video segments, so there was the problem.
So now, Ed Roberts meet Chris Brogan meet MN DD Planning Council meet… er, me…meet YOU.
WE NEED YOU
Do you have the technological skills to edit videos like the Ed Roberts video (above) into three or four, 1-5 minute segments?
Could you help us post them on YouTube and the Parallels in Time website?
If you could help us with just one video, that would be significant.
In exchange, you choose a job for me, from the list below.
Let’s Make a Deal
EXCHANGE—an hour for an hour, my services for up to 50 hours.
NO MONEY will be exchanged.
How Can I Help?
I’ve have experience working with individuals and families. I could consult with you by phone (in US) or email. (Check out my “About” page.)
I’m a decent Beta Reader and developmental editor. If you have a novel or ebook sitting in your closet, I can help.
I could ghost write a blog post, review a book or education/teaching product.
I could research a topic (of your choice).
Any other idea we mutually agree on.
Disclaimer: I’ll give you my best, but no guarantees. I can’t cure anyone.
FOR THE SKEPTICS
This is a labor of love. I’m volunteering, no financial gain. Many of the people in the videos were friends or colleagues, many are now gone, but their vision lives.
This is important work. It’s been a long road for people with disabilities and their families, we need to keep moving forward.
Even if you don’t have a family member with a disability, there are good reasons to get involved.
We have knowledge and experience in quality of life issues and long-term care that will help Baby Boomers, seniors and others who are in the “temporarily able bodied” or “yet to be disabled” group Ed Roberts spoke about:
“We’re all getting older. We can’t avoid it, can we? I look around, and I notice that a lot of us are getting gray. As we get older, we realize that disability is just a part of life. Anyone can join our group at any point in life. In this way, the Disability Rights Movement doesn’t discriminate. As those of us who are temporarily able-bodied and working for access and accommodations now get older, the changes we make now will benefit us as well.”
If you are interested: FIRST COME FIRST SERVED. You get to pick the video you will work on.
2. Choose a video you would like to edit into three or four, 1-5 minute segments. (I can help you pick out the segments, or you can choose what you think is the most powerful.)
3. Email me at MaryE.Ulrich1@gmail.com and we’ll mutually decide the barter exchange.
4. We both get to work. Deadline March 1st.
Watch Our Progress
Every Friday, I’ll post how things are going. If this is not a good time for you, but you know of someone who might be able to help with this project, please forward this information.
All prayers and best wishes welcome.
Keep Climbing: Onward and Upward
All my best,
If you have questions you think would be helpful to the group, please ask here. Otherwise, contact me privately.
What do you think? Will the barter system work? Will these edited videos help spread our message of independence, interdependence and inclusion?
Can you help us, and as Ed would say, “Be Extraordinary?”
“It’s NOT my Job”| Caregivers and Direct Care Staff
It is the little things that make all the difference.
For almost 11 years Aaron, my son with the label of autism, has lived with his buddy Jack with 24 hour support staff paid for by their Individual Options (IO) Medicaid Waivers.
In our dream plan and person centered planning, we imagined a caring staff who would not only help Aaron with his direct care needs, but also with community inclusion. We have had some great success stories. Some staff members have become friends and are like part of our family.
Aaron’s individual direct care people are the most important people in his life. He depends on them for everything. We depend on them for everything.
In “Dear Caregivers” Part 1, and Caregivers | Blame it on the Hose Part 2, I talked about our family’s experience with Caregivers and Direct Care Staff. I gave examples of great caregivers who go the extra mile to provide quality care to my son and others with severe disabilities.
This article is NOT about them.
This is about the “OTHER” caregivers and direct care staff.
You know what I mean by OTHER, right?
When we brought Aaron back from vacation after Thanksgiving, we found a notice that said the mail carrier had declared the house “VACANT: no further mail delivery.”
Since the guys have lived in this house for over 10 years and there were substitute staff in the house over the holiday, we wondered what could possibly have happened.
We learned the substitute staff didn’t take the mail out of the mailbox. In addition, all the Black Friday ads, newspapers and flyers were all laying in the driveway. No one picked them up, brought them into the house or threw them in the trash. In fact, several were all wet, soggy and had tire marks on them.
Hummm. Obviously, when the mail carrier came to the house it looked unoccupied. There are a couple foreclosure houses in the neighborhood. So, s/he declared the house “Vacant.”
Over the years, I have been to many town meetings with angry neighbors who didn’t want people with disabilities to move into their neighborhood. Because the house rental agreement is in Aaron’s name, my husband and I make sure the house and yard always looks well cared for.
The only solution I can think of is next time we write up an individual service plan (ISP) for Aaron, we will have to include “Staff will pick up the mail, and newspapers from the driveway.”
TURN ON CHRISTMAS LIGHTS
Aaron loves the Christmas lights and decorations on the tree. The first year he moved into his house, Grandma gave him her tree and we gave him all the special ornaments we had saved since he was a baby. Our family tradition was to give him one new ornament each St. Nick’s day to start the season. He had ornaments from us, from his brother and family members, from his teachers and school mates. Some were bought, some were homemade. Aaron loved to take the ornaments in one hand and flip them with his other hand.
Every year our dear caregiver would put up the tree around Thanksgiving. We really appreciated it. Since Aaron spends the majority of his time sitting on the couch in the living room, we felt he could at least enjoy seeing the Christmas tree with familiar ornaments.
Aaron is at the mercy of the staff
Nine out of the ten times we went to pick Aaron up or drop him off, the Christmas tree was never lit. The cord was on the floor and required bending over to plug it into the wall. We even offered to get a longer extension cord if that was an issue. But, even though the staff knew we were coming, they would just sit on the couch directly across from Aaron, and the tree would not be lit.
Next ISP will need to read, “From Thanksgiving until Christmas Day, staff will turn the lights on the Christmas tree from 6 PM to 9:30 PM. so Aaron can look at the lights.”
NOTE: I was going to give a lot of other examples, but this depresses me too much and I think you get the idea.
I’m expecting that sharing these stories will come back to haunt me. The agency will give this as an example of how we don’t appreciate their staff. They will probably say exposing stories like this, which are based on my actual experiences, are exactly why no one wants to work with Aaron. Not only is he a tough kid, but his parents are impossible, ungrateful people who are the problem.
In my personal and professional experience, many agencies SAY they want parents to be involved, but they really don’t. They would rather work with people with autism and developmental disabilities who have no parent involvement, no advocates, no one who would ever question what they are doing.
Many agencies say they want parent involvement–but what they want are parents who will just tell them they are saints and wonderful. Many agencies just want parents who will raise money for them and advocate to the state and county for increased rates.
I know people with disabilities who have family members who seldom see them. This is so incredibly sad. I used to think it was all the family members fault. Not anymore. It takes persistence and determination to keep on keeping on.
I cannot begin to tell you how hard it is to work with some of these staff people. Tom (my husband) and I have documented staff members who disobeyed the laws and agency rules. Sometimes, to the agencies credit, they did remove them: some smoked in the house, some left Aaron in hot cars while they went inside a store, some yelled at Aaron, some had cars that weren’t safe, some refused to clean bathrooms until the entire house smelled like urine, some asked us for money, some didn’t speak English, some came from different cultures and only thought of themselves–not Aaron.
If some of this sounds prejudiced. So be it!
Staff people have said to me: “But I don’t brush my teeth twice a day, why would I have to brush Aaron’s twice a day.” “I don’t use shampoo when I wash my hair.” “In my culture, we don’t give baths every day.” “I come from a country where it is always hot. So I need the furnace to be set on 80 degrees”–even though this made Aaron sick. The list goes on forever….
First Hand Experiences
I am pouring out my heart here. I couldn’t make up these stories. I guarantee each of these examples actually happened to us. They are all first hand experiences. I hope that by putting them on paper they will begin a discussion about how people like Aaron, who have severe disabilities, can get a better quality of life. That life depends on excellent caring direct care staff and caregivers. They have an important and difficult job. The good caring staff are more precious than gold. We love them and cherish them. We try and support them every way we can.
The OTHERS… well, they can still be nice people with good intentions. We hope they find a job they can love and do well…but not with Aaron.
Keep Climbing: Onward and Upward
All my best,
What would you do if this was your child? What do you think Aaron is feeling when he can’t talk or physically do what he wants to do? What would help? Do schools and adult service agencies really want parent involvement? Are parents just ungrateful?
If you this might help someone, please Tweet it, send it to LinkedIn, Facebook or other social media. Maybe you want to invite other parents to join us and tell their stories.
In “Dear Caregivers” Part 1, I talked about the critical role and some of the issues of the caregiver or direct care staff. Today in Part 2, I’d like to share a story of what happened last Thanksgiving weekend. Holidays stress everyone–the people with disabilities, the parents, the staff and the system.
We usually take Aaron home to our house for the holidays so we picked up Aaron on Wednesday. Our regular staff person happily began her vacation and we were going to return Aaron on Sunday evening.
We had a nice Thanksgiving with Grandma and the family. All is right with the world, right?
Blame it on the Hose
On the Saturday after Thanksgiving, Cincinnati was due for its first winter freeze. Tom remembered the outside garden hose was still hooked up at Aaron’s house. Since we take care of all the flowers, mulching and gardening at the house, Tom was worried the hose would expand, break, and cause damage to the plumbing inside the house. We treat Aaron’s house the same as we treat our own, so we drove to Aaron’s house to take care of the hose.
When we arrived, we were shocked that all the lights were on in the house. We knocked, but when there was no answer, we used our key and yelled our “hello.” The TV was on, there were newspapers scattered all over the living room, there was an open purse sitting on the chair, but no one was home.
Our first reaction was to check the house for bodies, worrying someone was hurt and therefore couldn’t answer the door.
Next, we wondered if someone broke into the house and ran out the back door when we pulled up.
Several years ago, the residential company brought homeless people into Aaron’s house when they knew Aaron and Jack were away for the weekend, (another post sometime) so we considered that possibility.
We debated calling the police but decided to first call the residential supervisor.
“What is your problem?”
She told us Jack and the sub staff person must have decided to go out (without her purse, I might add).
The supervisor assured us her company would NEVER just bring strangers into a home (she’s only been with the company for a year so legitimately, she might not have heard the homeless story). She told us they always have plenty of staff to cover holidays and basically made it clear we were bothering her when there was NO PROBLEM.
She also told us that even when Aaron and Jack go to their parent’s homes every weekend, there is still staff covering the house—which we knew for a fact wasn’t the truth.
So, what to do?
We fixed the hose. We left the lights, TV and mess. But once again, we cursed the residential company we are forced to live with. Once again they lost our trust.
We brought Aaron back with us, hugged him and gave him extra attention all weekend. We seriously considered just keeping him with us, but there are thousands of people on the waiting list for the Medicaid Waiver. So, if we gave up Aaron’s Waiver, it could be years until he got another one and we aren’t going to live forever. So giving up Aaron’s residential “slot” would only be a short-term fix to a long-term problem.
“I didn’t want to hurt your feelings.”
The next week we found out no one wanted to hurt our feelings and tell us no staff person wanted to work with Aaron. Apparently, they could find a sub staff person for Jack, but not Aaron. No one thought we would find out, and they thought they were sparing us emotional pain.
It was hard to be angry with anyone. Unlike the supervisor, we had a long history of trust with some of our caregivers. We know they love Aaron and give him extra attention and support. They are the ones who bathe, dress and feed him. They clean up his messes and work with us when we take our vacation. They were genuinely trying to protect us from the feelings of rejection they knew we would feel. But the miscommunication and chaos theory that geared its ugly head, made things worse. After all, Jack and Aaron were okay.
We told them to just tell us the truth next time—even if you know it will hurt our feelings.
There were also other messes that needed to be cleaned up from leaving the house in the hands of subs for the holiday.
When the staff person checked the mailbox her first day back, she saw a note from the mailman declaring the house “Vacant—no further mail delivery.”
Stay tuned for Part 3 of our continuing soap opera… Caregivers| “It’s NOT my job.”
Share your thoughts:
What would you have done if you were the staff person? What would you have done if you were the parents? What would you have done if you were the supervisor? What is the role of TRUST in a relationship? How did it make a difference? How do you think you would feel if no one wanted to work with your child?
Keep Climbing: Onward and Upward
All my best,
Supported Living, Assisted Living, Independent Living, Residential Services: The key to quality care is good caregivers.
It takes a special person to work with my son, Aaron, and other people with severe disabilities.
Even though you hear, “Ah, you must be so patient and kind” and “God will reward you in the next life” working with people with disabilities is a job without status. Often you are lumped into the same devalued fringe of society as our children.
The pay sucks. You work for the company for 10 years and you might make $10.00 an hour.
It is a lonely job. You basically have all the responsibility and there are few opportunities to talk with other caregivers, even the staff working with the same people.
The hours are long and since they require overnight, holiday and weekend stays, they disrupt your family and make it difficult for you to have a regular social life–even on your days off.
You can’t sleep well, you can’t plan your time, you are often given more responsibility–but no compensation….
You don’t have the support you need:
If you call a supervisor, you spin a roulette wheel and gamble whether someone will call you back, answer your question or give you backup. After all, the supervisors usually work during the day, and you don’t begin your shift until the day staff goes home.
Since there is such turnover in the field, you often can’t find a replacement for your own health and vacation time, even if you follow the appropriate procedures. There are few subs for emergencies.
When things go wrong, you are usually on your own to figure things out.
Many companies don’t have money for inservice, so while you work with people with some of the most complex needs in the country–you don’t get information and instruction on what you do.
You do get the blame if you do anything wrong.
Most companies don’t pay for sick days, so you are forced to come in sick.
Most companies don’t pay for your meal or expenses when you take the “client” out into the community.
Most companies won’t even pay for your mileage (unless the “client” is in the car), even if you have to run all over town to deliver timesheets, go to meetings, pick up prescriptions….
If a “client” gets sick, or there is a snow day, the roof leaks or the schedule changes, YOU are the one who must change your life to cover the person in your care.
Sometimes, the person you serve has a better life style, home and community life than you do.
BUT, BUT, BUT…
You are a critical member of our child’s team, and your attitude, work ethic and habits make a huge difference in our child’s life–and in ours.
So, why do you do care for people with disabilities?
I have met caregivers who say they feel this work is their calling. Others do it for religious reasons. Some do it because they have a family member and know the need.
Others do it for reasons that are not so noble. In the next post, I’ll talk more about this group.
Meanwhile, Every caregiver who sacrifices to work with Aaron and others is a blessing to our children and our family.
Every caregiver who can see our child and love them for who they are, is a gift from God.
We have had caregivers make Aaron part of their family. One even named their child after Aaron. Another took him with them on family vacations. Another took him to workout at the gym, picnics, and camp-outs with his friends.
One caregiver has been with us for almost 9 years. She works with us if we have to change our schedule. She has watched Aaron grow up. She makes sure he is always well groomed. She makes healthy meals. She is a gem who is now a treasured part of OUR family. We know she loves Aaron like her own child. She will tell us when the other caregivers are not giving Aaron the support they should.
There is no praise and thanks we can give to the dedicated caregivers who have been part of Aaron’s life. They make all the difference.
What are your thoughts?
Have you had experiences working with residential companies? Did the staff do things and engage with the “consumers” in activities of daily living and in the community? What thoughts do you have about what is mentioned? Have you had a caring long-term relationship with a child? family?
Keep Climbing: Onward and Upward.
All my best,
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