NOTE: Thanks to “Missy” who posted a question about working with direct supports professionals — balancing between trying not to upset the boat (upsetting the DSP staff) and standing up for the rights of your sibling. First, as my brothers Direct Support Staff will tell you, I do not have this figured out. But, I will share with you what I learned, what seems to work, and what still frustrates me. We welcome and encourage other people to comment.
Background: In our case, David is not personally responsible for hiring his own direct support staff. We work with a provider. The provider hires the staff, assigns the staff, there can be good matches and bad matches. And, of course, there is staff turnover. When you’re talking 24×7 supervision, that’s a lot of people. David and I made out holiday cards for 12 different individuals just for his residential care. There are individuals who come and fill in shifts. Temps. And then there are day program staff. I do not know who is with my brother at any given moment. I mean I don’t know which person is with my brother and often if I did know who, I wouldn’t know who they are. That is the frightening reality.
Speaking of the frightening reality, here are my top 3 daily fears:
- Fear of overloading “the system”. Too many complaints, you become just 1 big complaint and then you are completely ignored or humored.
- Fear of letting things slide. Wrong-doings swept under the carpet, then you haven’t done your job as an advocate. A little bit sliding all the time can snowball into an avalanche.
- Fear of retaliation. The worst fear is a concern that if you really piss off a direct support staff your sibling may suffer at their hands — either through neglect or worse, through specific actions. My brother is vulnerable, dependent on 24 hour support, and cannot call out or run away. For those of you with a family member who has more severe disabilities, more medically engaged…you know that an act of omission can have dire consequences.
Fear and Trust
I want to be aspirational. I work hard to live in continued hope of a fabulous future for my brother. The problems, however are in the “now.” And the consequences are tomorrow… when I have gone and David is alone.
Fear is the dark side of the lack of trust. Last year, I did some best practise research in a different state. I went to a provider who was really working community living. I wanted to see how another state and agency managed this best practise. I spent the day with all of the staff and shadowed them on their jobs. Finally at the end of the day we had a roundtable discussion. I asked: “As a family member, how can a person like me (in my role) work most effectively with people like you (in your role)?” Every single person sitting around the table said “you have got to let go of some of the control, the details, and trust in us.”
I reflected on this during the long drive home and repeatedly afterwards. They have a point. I don’t trust. Why not? The risk is too high. My brother, Walter, choked to death eating a peanut butter sandwich (he had known trouble swallowing — no gag reflex — and “shoveling” and was left alone in the kitchen with peanut butter sandwiches left laying out). I confess that I will not be able to suppress this fear. And this fear is exacerbated by the frequent anonymity of the staff on any given day. I try to find ways to manage the fear factor. Daily. I absolutely must concentrate on the positive.
What Seems to Work
The hardest thing is coming to terms with “least bad” reasoning. Let’s face it, if you have a loved one in any type of care facility or care program you are often faced with making “less bad” decisions instead of great decisions. I long for the time when our reasoning and decision making is aspirational versus less injurious. This is my hope for the generation coming of age in the next 10 years.
- When I can’t hope to learn all the staff, I have gotten to know the management and supervisors in charge of the day program and the residential program. I have their phone numbers on speed dial in my cell phone. I talk to them throughout the course of the year. Not just during planning meetings. I call meetings so that the IDT meeting is not the only chance to talk.
- I work hard to provide materials to let people get to know David. Last year I put together this little pamphlet for David’s staff so they could quickly get to know him (David Fialkowski, All About Me). It was good for temp staff. It worked for a couple months. So that’s something else I learned. What works is stuff that is standard, repeatable, constant. That’s what the “system” is set up for. My “try this try that” — doesn’t work. I used to be disappointed. Now I’ve learned that I need to do things that can be reproduced, not just for David but for other individuals who are served by the same provider.
- I constantly pick and choose my battles. This is relatively new. My mouth was on auto-pilot: see something, say something. I had to learn (still learning!) to automatically filter and prioritize. I prioritize based on a) most important first (health and safety) b) treating David like an individual with self determination c) things that can help the other individuals as well as David. This filtering leaves me unhappy. There are battles I swallow like the fact that the day program building management asked them to ride up in the service elevator. Or that the office doesn’t have a wheelchair button to automatically open the door (why does it need one, there’s always staff with them?)
- What could I do better? I could make more of an effort to get to know the people around David. But, what would be even better is if there was a circle around David so that it wasn’t just me. More people calling his house and asking “who am I speaking to? how are you today? how long have you been working with David? do you have children? how long have you been working in the field,” etc. I just don’t have enough hours in the day. I just about manage asking about David. As I mentioned in a previous post, everyone needs a circle. Share the load, rotate the calls. I hope you have one! I mean, wouldn’t that be a great idea: to set up a calling circle? Rotationally call on each other’s families? Use a contact database like sales people do… maybe even call people who are in “crisis” and check up on them and their care … but I digress….
Treasure Those Who Work
There are plenty of support staff who do a great job. And when you find one, they are a gem. My brother has had some staff stability in the last few years (since he moved to his new house). For the moment, we have staff who’s concerned about David in a long term basis. We form attachments as a family. We can invite these people to accompany David to family weddings, professional events, etc. And once there is some staff stability we can start talking about things like self determination, using the iPad for communications, going places specific to David’s likes, hopes, dreams.
What’s YOUR Situation?
What have you found? What works? How do you keep an open dialog? Do you know your DSPs? Please share, we can all learn from each other…
Yours in Community,
There are a number of guides for “new parents” – parents of children diagnosed with developmental disabilities. They inspired me to share a few thoughts to those who may be newly indoctrinated into this redefined sibling role.
“Grief stricken. Depressed. Overwhelmed. Add in all the stages of grief, too!”
Even though my parents and I had many talks about what would happen after… meaning after one, and finally both, of them died… I was still unprepared for what was to come next. The responsibility of another person. The oversight of a support services. The comparison of myself to my mother. The guilt for falling short. The fear that my lack of knowledge, time, insight, would result in serious impact to someone I love. The fear of failure. Uugh. The depression I felt at the lost of my parents (my father having died just 2 years before) deepened with the feeling of being overwhelmed with this new responsibility. As the “chosen one” I felt very alone in this obligation and I was not mature enough to know how to manage it with my siblings. Further, as my parents had done, I felt that this was my responsibility alone and that part of my assigned job was keeping the “responsibility” of it from overflowing to my siblings.
Grief had a compounded meaning. Grief over the loss of my parents. Grief over becoming an “orphan.” Grief over what I thought was loosing my old self to new roles and responsibilities. That was a lot of grief to get through. I’ll be honest, it was not easy. Not straightforward. And it was not quick. And to this day I have occasional bouts of grief and sorrow. On the positive side, it is now more like “I wish my mom could see this!”
My first mental step was role redefinition. I had to define what my new role was to become.
At one end of the spectrum was the “caring sibling.” The sibling who loves my brother. Who has an interest in his life. Who has him come to the beach on occasion and tries to remember Christmas presents for him. This was my original role. I liked this role. It was comfortable.
At the other end of the spectrum was my mother. My mother’s full time job was managing David’s supports services. She was often at his house. He was often at her house. She called the house every night. She had meetings almost every month. She knew every staff member by name. She remembered their birthdays, etc. She told me this was part of the package… once David moved into the community the relationship was no longer just with David. The care was not just for David. But now She was hyper involved.
What can you manage? What does your sibling want? What does your sibling need? What I have learned over the last 15 years is that my role moves along the spectrum between the two points. Some years I can be or need to be or want to be more involved. Other years, I am less involved. It is not a constant. And, there is no relationship in my life that is completely constant in the amount of time, energy, and dedication — I can celebrate in the normalcy of this instead of beat myself up about it.
For those of you in the throes of this … I’ll bet you understand me when I say that
I have finally, after 14 years, forgiven myself for not being my mother.
Gather Information, Build Your Advocacy Skills, and CONNECT
Parents learn about advocacy and working the system as they have been doing it even before diagnosis (in order to get a diagnosis!). Siblings are often sheltered and isolated from those learning experiences. Siblings are often thrown into advocacy when they are least able manage it – at a time of great personal stress and grief. Further, systems are not set up to recognize siblings as advocates. Siblings are often barred from accessing important information (HIPPA regulations), they are isolated from the processes, may be physically distant. There are a lot of barriers to overcome and frankly it’s easier to give up, hand over the care to a caregiver, and rest at the “family” end of the spectrum I mention in role definition, above. If somehow you land on this path, I understand completely! I also know that it might nag at you over and over again and the longer it goes on the LESS you feel capable of doing because the problem seems to be getting bigger!
Those of us with responsibilities must minimally practice “no regrets” advocacy.
Being a sibling, there’s nothing left of ourselves to practise “woulda coulda shoulda.” Here are three levels of involvement for you to consider.
LEVEL ONE: SECURITY … ADDING A LAYER OF PROTECTION AROUND YOUR SIBLING WITH DEVELOPMENTAL DISABILITIES
You absolutely must play some role in the life of your sibling with developmental disabilities. At the very minimum, in any setting, you want the provider to know that this individual is connected to a family that cares. If you do not do this, it puts your sibling with developmental disabilities at risk. This means, sending cards, calling to check on your sibling, and (if your sibling is living in a provider setting) on a regular and unscheduled basis you must go visit your sibling.
If you are not the sibling who is the primary caregiving/advocate you should still do these things! Even if you have to come in from out of town for a day. Why? You must increase the odds of safety. This is true if your sib lives in an apartment on their own, in a house with others, in a group home, and certain if they live in any congregate setting. Let me give an analogy. They say that if you have the sign of an alarm outside your house that is almost as good as having an alarm inside the house. This is what I’m talking about. The simple fact that you have some level of involvement helps put a level of security around your sibling. It says “someone is watching.”
Note: this might be ground you have to work out with your sibling. You don’t want them to feel that you are negating them or being too overbearing. So talk it through with your sibling so they know what’s going on.
LEVEL TWO: ADVOCACY… ADDING VALUE TO THE LIFE OF YOUR SIBLING WITH DEVELOPMENTAL DISABILITIES
Okay, so you want to do more. You want to be involved. And you want it to matter. First and foremost, you have to be the watchdog of the RIGHTS of your sibling with developmental disabilities. Can they watch out for their own rights? Encourage your sibling with developmental disabilities to get involved with a self-advocacy organization like Self-Advocates Becoming Empowered . Other self-advocates are great peer mentors and can help support your sibling in their own advocacy. At the same time, you should learn the rights of individuals with disabilities. The ARC has a high level overview.
LEVEL THREE: ADVOCACY+ … HELPING YOUR SIBLING LIVE THEIR OWN INDEPENDENT AND CONTRIBUTING LIFE
At the upper end of the spectrum is really providing that extra level of support so that you are no longer talking just about security but you are there to help your sibling with developmental disabilities contribute in a meaningful way to society, maximize his or her potential, express their independence and self-determination. And these are all possible for any and every individual.
Okay where do you start?
- Talk to your family (talk to your parents before they die and find out what are their hopes and dreams. Talk to your sibling with developmental disabilities and find out THEIR hopes and dreams. If they can’t tell you, spend some time with them and learn what they love and you must learn what puts them at risk. Talk to your other siblings and find out where they want to be on the involvement spectrum (okay, note to self: I have to do this with my sibs)
- Gather information on the rights of individuals with developmental disabilities ( the DD Act, the National Disability Rights Network)
- Work on your advocacy skills and speak the language (people first language )
- Get connected to a community (for example, Sibling Leadership Network, Siblings on FaceBook … Connect to me first and then we can get you connected, one by one, to others, join the ARC
- Do something on a daily basis. Make this part of your daily routine. I don’t know it all, I have plenty to learn. I learn more every day. But the honest truth is that it took me 15 years to wake up to the fact that
Being a sibling of an individual with developmental disabilities is a way of life – it is not a phase. It is a marathon, not a sprint. To run a marathon you need daily conditioning.
Yours in community,
Note: Recently I published a post on using the iPad for augmentive communications. This is an update to that blog entry.
Some of you have been wondering about the status of the iPad in communications with my brother David. Thank you for your inquiries.
- I have good news… we progress! I am delighted to share with you that we had a management meeting with David’s service provider. Everyone at the meeting was fully supportive of trying the iPad for communications. In fact, we are going to get TWO iPads. One for David and one for another individual! David and this other individual will be the “test cases.”
- We had a terrific conversation about AAC — what it is and how it works and two “ah ha” moments were realized
- Several behavioral issues may be caused by frustrated attempts at communications?! Ah Ha!
- Communication isn’t just about words but it is about us expressing ourselves and there are many ways for a person to express themselves…some through art, some through music, as an example?! Ah Ha!
- We are working through a) technology (which software to load, how to get the downloads and yet how to “secure” the device) and b) staff training on using the tool with an individual so that it is an individualized experience.
This meeting was the best Christmas gift ever. It will take a while for the next stage to unfold, so stay tuned.
In the meantime, back at Sib-Central-HQ, David and I spent Christmas together. Two vignettes
- I continued to work with the iPad and the Yes/No. “David, do you want to eat?” (I present the iPad. David, pushes iPad away and gets up and walks to the dining room). So, there you have it. iPad, as good as it is, should not replace common sense 🙂
- David and I played Virtuoso Piano Duet together. So what? For those of you (parents, siblings, other family members, …) who struggle to meaningfully interact with your loved one, you will immediately understand the so-what. The two of us, with this little piece of equipment between us, sat face to face and as David initiated on his piano, I responded on mine. Yes, there are many ways to express yourself and as a sibling, this was mine… doing something together versus simply sharing a space. Another big day in sib-central.
What can this mean for you?
- Never give up exploring methods for an individual to express themself and extend themself. Never ever give up.
- Celebrate the small successes.
Yours in community,
NOTE EXTRA RESOURCES HAVE BEEN INCLUDED!
Reader warning: if you are not a sibling or family member of an individual with developmental disabilities, stop reading. If you read the word Taboo, and you think “I shouldn’t…” then stop reading. If you see the word SEX and immediately shut your eyes, stop reading. If you are scared of reality and want to pretend it’s not there, stop reading. And if you’re just not ready for this topic, bookmark it… but come back to it.
This is a hard story for me to write but it’s so important, I’m going to share it with you. My brother David was already living in the community (not with my parents). He was home visiting. One Saturday morning I was helping my mother wash David and get him dressed. It was labor intensive. David and I are about the same size. Getting him into the tub and out of the tub is hazardous and my mother was showing me some safety techniques. She was sitting on the toilet and I was on my hands and knees by the tub washing David. My mother said ” you know, whenever you have David, you have to check him.” I thought “what the heck does that mean?” but I said nothing and didn’t even look up at my mother. In my gut I knew this was a conversation I wasn’t ready for. “You’ll have to check him,” she repeated. And then, in gentle detail my mother explained that David was likely to be the victim of all kinds of abuse including molestation and that one of my hardest jobs (among many hard jobs!) would be vigilance on this topic… which would include checking him for all kinds of signs of molestation (delicately, sensitively, and while talking/explaining). UUGH. Talk about a difficult topic to have a) in general b) in such a delicate setting and c) with your mother. We hit the trifecta.
If you are an adult sibling thinking that maybe one day (or maybe that day has already come) you will have primary responsibility (advocacy, care giving, guardianship, etc) for your sibling, then this is a topic you, too, should talk to someone about. It’s “taboo.” Perhaps the biggest taboo there is. We don’t discuss it. If you’re like me, you’d rather go to the dentist than discuss it. Other people don’t want you to discuss it with them. Even still, they are, perhaps, the most important conversations you can have. They are also frightening, freaky and, by instinct, you might want to avoid them all together. Nonetheless, they are absolutely necessary to consider.
- Sexuality. Let’s start more generally with sexuality. Don’t we all hate to talk about the sexuality of a sibling or a parent? It goes into the category of TMI (too much information). However, sexuality is a normal part of human existence. Just because your sibling is an individual with developmental disabilities does not mean that they do not experience sexual urges. Teaching sexuality teaches appropriate behaviors and can also give the individual tools to protect themselves from unwanted sexual advances. Also, I don’t know about you, but I was more likely to discuss sexuality with a sibling than I was to discuss it with a parent! For additional thoughts, here is a workbook on having the conversation. Also, the ARC has produced this position statement on sexuality. Check out the pdf.
- Reproductive Rights. A harder subject. For those of you with sisters and daughters, it is even more difficult. It crosses over between women’s rights and disability rights. A touchy subject full of moral dilemmas. This covers controversial subjects such as sterilization, selective abortion, and genetic testing. This is a totally private issue but one in which the ethics and individual rights absolutely must be considered. You need to have this conversation with yourself before engaging others in the conversation. Read about it. Develop a perspective and why you have your perspective and then engage others in your family in the conversation. Most importantly you must engage the individual in the conversation. Here are some general facts re reproductive rights.
Why have these conversations? Probably more than any other reason, as T’d up at the beginning of this blog, we all should be concerned about SEXUAL ABUSE. Here is a frightening statistic:
- Don’t take all topics (sexuality, reproductive rights, and abuse) at once. This is a difficult arena and can overwhelm you. Even writing this short blog is overwhelming to me :-)!
- Read, read, read. Decide your individual perspective. Understand why you have it. You have a right to your perspective. However, that does not necessarily give you the right to act on your perspective.
- Find someone with whom you can discuss each topic as you choose to undertake it. You are not alone. Use your network. Contact your local protection and advocacy organization (http://www.ndrn.org/).
- Talk to the local University Center of Excellence (UCEDDs). I spoke with Katie Arnold… she reffered me to the Sexuality and Disability Consortium (SDC). SDC has grown as a collaboration of self-advocates, faculty, clinicians, community educators, researchers, and graduate students from the Institute on Disability & Human Development at the University of Illinois at Chicago, Illinois’ University Center of Excellence in Developmental Disabilities. The mission of the SDC is to provide research, advocacy, training and education to support people with disabilities to enhance healthy sexuality and relationships. The SDC’s primary goal is to promote best practice approaches for people with disabilities, families, professionals and policymakers, with a focus on people with I/DD. Their website is http://www.idhd.org/SDC.html
- Contact the Sibling Leadership Network and see if they know of someone in your area or someone online you can talk to.
- This can be uplifting. Sexuality can also be about the power of rich and meaningful relationships. Read this great resource: the IMPACT feature issue on sexuality by the Institute on Community Integration (UCEDD) & Research and Training Center on Community Living at the University of Minnesota. http://ici.umn.edu/products/impact/232/232.pdf. It includes articles by self-advocates, parents, professionals, and lists a lot of good resources.
- As always, knowledge is power. Prevention is a pre-requisite. Vigilance is necessary.
Yours in Community, Kate
While on the road for the Envisioning the Future Summits, I learned quite a bit about AAC (Augmentative and Alternative Communications). These are “devices” that sit like a tray in front of an individual. The individual can use an eye gaze, some sort of typing, word selection, etc to pick and choose their way through a vocabulary to communicate with to other individuals. Sometimes the process of communicating with these alternative forms of communication can be quite cumbersome especially if the recipient of the communications a) doesn’t understand how the process works or b) is in a real hurry. I met one woman and in trying to carry on a conversation with her, her assistant said: “Shorthand is to ask yes/no questions. She can move her eyes to signal yes/no.” The woman and I had quite a detailed conversation using only yes/no and avoided the AAC all together. I’m not saying avoiding the AAC was the right way to go. But I am saying that learning both options was an important process for me. And I realized just how much we can talk just with yes/no responses.
Flash forward to this week. I spent a couple days with my brother David. David is not verbal. Yes, he communicates. He vocalizes. He lets you know when he is unhappy. He laughs when he is happy. But, I wondered, instead of happy or unhappy could it be possible that David could answer YES or NO questions? David is unable to use flash cards. Those flat pictures or words have no meaning to him. But, David does respond to verbal requests. I wondered…
I never tested a DynaVox or some such with David. These devices cost between $5000 and $10000. Today I realized I have an iPad! I heard several people at these summits mention that there is software available for the iPad. I went on line and queried AAC for iPad and came up with several options:
- Proloquo2go. Costs $189.00. Thats a good price compared to $5000.00.
- TaptoTalk. $99.00.
- MyTalkTools. Cost $34.99. Yes, that’s right, under $35.
- YesNo. Cost $1.99. Yes, you got it under $2.00! Two options: yes and no. Man/woman/boy/girl voices. And the option to program in other pairs of words and record the text!
Here was my big moment today. I simplified the MyTalk so that it only showed 2 options on the screen. Yes and No. I mean, lets just start with the basics.
“David, would you like something to drink?” (I hit yes, I hit no. I did this repeatedly and then showed David how to do it. Repeatedly.) “David, would you like something to drink?” David extended a finger and pointed. I showed him he had to tap the screen. Tap, went David. “Yes.” I hurriedly got up and got him something to drink. No, I didn’t sit and offer 25 options. Yes, he said, and I wanted to get something in his hand immediately.
I tried this for an hour. Various questions. Yes/No responses. David sometimes answered yes, sometimes no. It was getting late. I cleaned up all the glasses and other things I brought him from the yes/no questions. Time for one last question: “David, its time to go home. Do you want to go home?” He looked up at me and shook his head. He reached up to the iPad and hit “No.” Was this a fluke? I moved the iPad so this wasn’t a ouiji answer, guided by me. “David, do you want to go home?” He looked up at me, reached out with a finger and hit the iPad. Tap. Tap. Tap. Tap. “no, no, no, no.” Forget about going home, iPad aside, we went to the living room and sat on the couch. I had nothing to say.
My brother is 48. I am 46. This is the first time we had a conversation of any sort. It was a really big day. Thanks to the iPad.
I have to figure out how to buy one for him a) without worrying about theft and b) teaching staff to use it with him. Perhaps this is our 2011 goal.
Now I wonder… how do we get these devices in the hands of every school aged child with developmental disabilities that could benefit? Is there a donation program? I found one for children with autism: HollyRod Foundation. I saw some individual classrooms requesting them in DonorsChoose.org. But, come on, this is perfect for Best Buddies, Special Olympics, or the Arc to pick up. If you hear of anything like this, let me know.
I’m obviously not the first to report this news. All I can say is when it happens to you, you’re the one who becomes speechless. Other articles can be found here.