Reinventing your life with your Occupational Therapist

A pet peeve for Occupational Therapists (OT) in the world of Rehab is when someone who is not an occupational therapist says, "Oh, the OT helps you with upper extremity exercises, cooking and learning how to take a bath and get dressed." OTs do these things and a whole lot more. The best description of Occupational Therapy comes right from the OT program at the University of Kansas: 

Occupational therapy helps people improve their ability to perform tasks in living and working environments. It's a science-driven profession that enables people of all ages to live life to its fullest by helping them promote health and live actively with illness, injury or disability.

This is a perfect description of the way an OT develops supports and strategies for people with brain injuries in the community. I once had someone tell me they didn't think a woman named Sasha could make improvements because her brain injury was too severe, she couldn't list 3 goals she had for rehab and she didn't want to go out of the house because she knew people would stare.  My immediate response was to send in an OT to work with Sasha. Here are the 5 things that happened: 

5.  The OT was able to help Sasha understand that it is natural to be afraid to go out into the community for the first time after such a big event and that it can feel like everyone is staring but it takes practice to overcome both. They decided to break things down into manageable steps. 

4. The OT got Sasha out into the community for the first time since her brain injury. The OT was able to offer reassurance that she would help Sasha be safe (not fall), figure how what she could do (assess strengths) and have fun (live life to the fullest). Their first time out was a walk to the car and a ride to the store. They sat in the parking lot watching people and Sasha decided that was enough for one day. 

3. Sasha was able to identify a few things she loves to do like make bracelets, cook Indian food and do yoga. All three seemed beyond her capability (to her and to her physician) but the OT decided to help address all 3 goals. They involved not only upper extremities and functional movement but also included cognitive skills like planning, problem solving and reasoning. 

2. The OT was able to translate to the case manager and insurance company why these goals are medically necessary and would lead to a more independent lifestyle for Sasha. Being able to "medical speak" is a wonderful attribute of OT's who are also able to live in the real world of every day language. 

1. The OT was able to help Sasha set goals, achieve those goals and believe in herself. She took the bracelet making, cooking and yoga well beyond those goals and Sasha is now employed in a field she had not experienced before her brain injury. 

So, when in doubt, always call the Occupational Therapist in to help with a fresh perspective on living life to the fullest. OTs have a  great vantage point on the social, emotional, cognitive and physical in a way that helps each individual develop their own plan for achieving goals. 

Navigating Home

Anyone can live at home, no matter the significance of disability. Three critical components to make that happen are significant social support, advocacy and resources. Thankfully Kansas has been a forward thinking state in this regard for many years. They have even passed laws making it a right to live at home and not in a facility. The recently designed KanCare system has not changed the constellation of services available, just how you access them. 

When a significant incident happens forcing you to rely on disability or public assistance, you are forced to deal with the daunting medical issues and decisions while being expected to figure out how to traverse the many steps to get home. The first step in the process is applying for disability. Below is a chart that was developed between Stormont Vail Hospital and Minds Matter LLC to help people navigate the disability and eligibility maze. This is a necessary step in the process to get in home services and supports after brain injury. If you are starting this process from the hospital, the social worker can help you get started. If you are starting this process from another place, like a rehab facility, nursing home, or from home, you can utilize Minds Matter LLC to get started. 

The steps to getting on the Traumatic Brain Injury waiver in Kansas. 

The role of a speech therapist on your journey to inclusion

I remember the first time I sat in on a team meeting about someone who was receiving speech therapy at the rehab hospital where I worked. I was a recently hired social worker who had just graduated from college so I was sure I knew everything. I knew the person we were talking about well. We met weekly to talk about her desire to go home. She was articulate, bright and had no issue telling me what was on her mind. I sat in the team meeting wondering why she needed speech therapy. 'She speaks so well,' I thought. The speech therapist gave a 15 minute report and detailed the reasoning, judgement, problem solving and memory issues they were working on. I was mesmerized by the techniques they were using to address upcoming functional issues the person would address when she went home. From then on, I spent as much time as possible with each of the speech therapists at our rehab and learned about communication, every cognitive challenge after brain injury and fascinating ways to help people improve their functioning. I began to believe everyone with any cognitive- communication issues needed a speech therapist on their team. 

Fast forward a few years later when I became immersed in believing that everyone has a place in the community. I met a great man named Dr. Mark Ylvisaker, a speech language pathologist, who continues to have a profound impact on our work here in Kansas. He gave voice to the need for positive everyday routines for people living in the community, no matter the significance of their disability. He believed that everything we say or do is a form of communication. I specifically learned the most from him about how behavior is an important form of communication. Our job is to help people find ways, through every day routines, to effectively communicate what they need. We find that the transformation that happens when people are able to have control over their daily routines and communicate their needs more effectively, positive behaviors result and negative behaviors go away. We, at Minds Matter, still use Mark's work, across therapy teams, to support positive every day routines. 

Dr. Ylvisaker, and all other speech language pathologists, have taught me that the role of a speech therapist goes well beyond "speaking well" and swallowing. The speech therapist plays a vital role on any team helping assess, and implement plans that address all facets of cognitive functioning. 

We have 9 speech language pathologists at Minds Matter LLC who each have a different approach with the same goal, to support every day routines in the community whether it be using a communication device (see Grant's story), learning to manage their aphasia, learning to communicate in a positive way, or implementing any of a myriad of cognitive strategies to be successful away from professional help. 

Dr. Ylvisaker passed away May 23, 2009. Over the course of his 35 year career, Mark gained worldwide distinction for his ground-breaking approaches to brain injury rehabilitation and his clinical work with children and adolescents with disabilities, assisting programs in all 50 states and over 15 countries in the development of innovative services. He was known and respected throughout the world for his boundless optimism and his passionate commitment to his work, to the people he supported, and for his unique ability to help individuals with disabilities, families, and professionals overcome barriers and achieve success in life. 

Here is a link to a great interview Dr. Ylvisaker did in 2007. It amplifies his belief that formal testing can be very limiting and thinking across disciplines is critical in helping people be successful after brain injury:

http://www.internationalbrain.org/articles/on-neurorehabilitation-a-conversation-with-mark-ylvisaker-phd/

Social Capital the Key to finding a Job

Joe experienced a brain injury in a car wreck. When he finally made it home after numerous rehab stays, he had a cognitive therapist and independent living skills specialist he met with on a regular basis. When he wanted to update his goals and talk about his progress, they would meet at the local donut shop. These meetings went on monthly, and sometimes he would meet with staff there individually as well. After 3 months, Joe said he was ready for a job. He approached the manager at the donut shop who immediately said, “You know, I have seen you in here a lot and a few times I thought about offering you a job.” Joe is now working 20-30 hours a week and no longer has staff.

According to the Bureau of Labor Statistics, in 2013 the unemployment rate for people with disabilities was 82.4%. That means only 17.6% of people with disabilities have jobs. The human service industry spends billions of dollars each year to help people get back to work. So how are we doing?

Thankfully, many people in the human service field have discovered the power and potency of social capital. Social Capital is a construct developed to look at the relationships between people in communities. Originally measured without asking about disability, the research found that those people with more social capital (friends and connections) were happier, healthier and lived longer. Social Capital is what got Joe his job, not a human service professional telling the manager about all of Joe’s deficits and problems. Joe was familiar to the manager as a guy who frequents the donut shop, not someone who was brought in there to find a job.

The best place to start when talking to someone about finding a job is to explore their already familiar relationships and things they like to do. Mary likes to make bracelets and goes to the craft store frequently? How about a job at the craft store? Joe likes to play the guitar and hang out in coffee shops? How about working at the coffee shop? If you start with a person’s passions and places they frequent you will make your job as coach and support a lot easier. You will also find that people are successful because they are doing something they are passionate about and had ownership in discovering.

Whatever it takes

Yesterday, which was Sunday, one of my staff spent the day at the jail. A woman we work with was arrested for a minor infraction, which soon became a really big deal because she was off her medication and hit a police officer. She has been in jail for 4 weeks. She is struggling to contact her court appointed attorney, isn't on any of her meds and is worried sick about her cat. When the staff person held her business card up against the window, the woman started to cry. When she held up a note and said her cat was okay, she started visibly sobbing and shaking with relief. We know she is in dire straits because she has met the staff person a few times before and always knew her name but didn't recognize her. It is a bad situation. We are grateful to be able to do what we can to help.

If you are in human services and have a passion for this work, this is who you are and what you do. We can't bill anyone for that time. We don't need to. The doors are open and our money comes from the services we can bill to provide. It is part of what we signed up to do when we said we would do "whatever it takes" to help people live in their own home. 

In our new world of managed care, that is called a value added service. When we work with people there are a lot of value added services we provide. Not everyone likes all of them. We are noticing that some of the case managers with the insurance companies don't always want us involved. Perhaps they don't understand how this benefits people. Perhaps they don't want people watching. Or perhaps they just don't see the difference between what we do and what they are supposed to be doing. I also know what we do can be seen as a message that the insurance case manager isn't doing their job. That couldn't be further from the truth. We fully understand the constraints of having a clear line between what can and cannot be done. We are trying to fill the gaps. We are slowly limping toward a partnership that will work for everyone. I spend a lot of time thinking about those relationships and, in the end, I believe our intent will be recognized. It is the most amazing partnership when it works well. 

People often ask me how managed care is working for us. When I say it is going well, they look at me suspiciously. Is there something I am holding back? If I have complaints about managed care, they are the same complaints any healthcare provider would have about working with insurance companies. The paperwork, changing policies and trying to figure out how each insurance company is interpreting the guidelines of a program we have worked with for 21 years, takes up much too much of my time. We are mostly at their mercy. I look forward to the day, and I know it will come, that I won't have to spend days sending endless emails asking about very small details that affect payment and services. And wait for replies. 

So what's the upside? We get to go to the jail and the courthouse and the homeless shelter and the nursing home to get people out, we get to love what we do. We get to help people find a job at Dunkin' Donuts, get a car and get off Medicaid. We get to see someone communicate for the first time with his wife via his new Tobii that we fought hard for to be purchased. We get to try and fail, and try again. We get to have amazing relationships with our coworkers and clients, creating community. And that is why we signed up for this work. 

Do you want to live at home?

There’s no place like home – especially for individuals who have experienced extended stays in hospitals and rehabilitation facilities. We understand your desire to return home and we’ll work with you to make it happen.

Minds Matter LLC believes everyone can create a meaningful life in their community and we have been helping people do so for more than twenty years. We can help you reinvent your surroundings so it’s possible to live, work and play comfortably and capably in your community. We begin by learning about your needs and challenges along with your goals and dreams. Then, we assess your environment and identify obstacles that may stand in the way of success. A few minor changes – added equipment, structural changes and assistive technology – can make a big difference as you pursue your goals.

Independent living doesn’t mean living in isolation or doing everything on your own. It means   having opportunities to make lifestyle choices – the same kinds of opportunities that other members of your community enjoy.

Sometimes it’s necessary to learn new approaches or strategies for accomplishing tasks. Our team will work with you to identify barriers and create solutions that work.

Here are some questions to begin the process:

• What daily routines and tasks are important to me?
• Is my home safe and comfortable?
• How can I connect with friends and neighbors?

With the aid of specialized devices and equipment, it’s possible to perform a wide range of tasks. Individuals who face challenges with mobility, communication or management of household responsibilities can increase their independence with assistive technology.

What do you want to accomplish? Our therapists will work with you to make it happen.

• If there’s an activity, a hobby or an employment opportunity that you wish to pursue, we can help you overcome the obstacles you encounter.
• We listen to your goals, assess your current abilities and then recommend equipment or technology that will take you where you want to go.
• With training, practice and the right equipment, it’s possible to rise above perceived limitations and take charge of your life.

Kansas has a great program called Money Follows the Person. You can receive funds to move from a skilled nursing facility to your own home. You can also have assessments  and modifications to make your new place accessible. Give us a call today so we can assist you in your journey home. 

You can reach us at (866) 429-6757

Spread the word that the community works for everyone

For the past 19 years I've worked in Kansas trying to create a system for people with brain injuries and other disabilities to have the same access to the community that I do. I believe that everyone has a place in the community. With the right supports, that don't have to cost a lot of money, people can find their place.

I've looked at the system that supports and oppresses people from both an intellectual and a practical level. Sometimes they coincide, sometimes they collide. Until recently I believed things mostly coincided. A recent gutting of Kansas Medicaid by 10% ($22 million in one fell swoop) is making me face where things collide. Intellectually and practically I believe institutions can and should be closed. My intellect and practical sides collide when the same people who gut Medicaid one day, just days later, have serious discussions about closing two more institutions. Seriously? You are talking about more Medicaid cuts to community based services while expecting those who provide those services to step up and support people leaving institutions when so many already doubt it's possible? Um, thanks.

I started this blog to have a place to get the word out that the community works for everyone when the system and supports are set up in a way to help people control their own services. I will be posting upcoming legislative activities and ramblings on how to make sure that the community is working for everyone.