Community Inclusion after Brain Injury: busting myths, revealing reality

Community Inclusion after Brain Injury

busting myths, revealing reality

by Janet M. Williams, PhD

president, communityworks, inc.

When Joe was 18 years old, he was involved in a nearly fatal car wreck. In a race against time, a life flight team transported him to the nearest trauma center. His chances of survival were uncertain, but his diagnosis was clear: Joe had experienced a significant brain injury. 

As his loved ones worried and waited, Joe began to emerge from the coma. He was assigned a case manager – a person who represented the interests of the insurance provider. Joe’s journey had begun. He was directed to various "treatment" programs that pledged to maximize his rehabilitation potential. One year after his injury, the insurance company determined that Joe had achieved all he was capable of achieving. He was sent to a center designed specifically for people with brain injuries. His bills would be paid by Medicaid. According to the insurance provider, the best possible outcome had been achieved. Joe didn’t agree. Joe wasn’t satisfied with this outcome and he wanted more options. He wanted to decide for himself – and he wanted to return home. Sadly, Joe’s fate was based on myths that limit opportunities.

Myth One: People with brain injuries must be fixed before they can return home.

The Reality. The traditional medical model approach for providing services for people with brain injuries is inadequate in supporting self-sufficiency and community membership. The current service system focuses on "fixing" individuals through the use of deficit- based assessment and planning (Williams, 2008). It is grounded in the notion that individuals living with brain injuries require intervention before they can "earn" the right to re-enter the community. The constellation of deficits becomes the reason to keep people in protected environments, often at great financial and emotional cost to the person, family and society. An overwhelming number of requests from people who wish to make the transition back home are ignored. Instead, they are redirected to nursing homes and other long term care institutions. 

Myth Two: People with brain injuries only have one productive year of recovery. After a year: "what you see is what you get."

The Reality. All too often, medical professionals stop recommending rehabilitation after a person reaches the one-year anniversary of a brain injury. While many people may experience rapid, remarkable progress the first year, progress continues well beyond that time. In fact, it often takes a year for the person to advance to a place where they can develop insight into what has happened and begin to establish their goals for moving forward. It is at this time that individuals’ interest and desire to participate in rehabilitation ignite. The one-year mark is often a place in the journey where people begin to realize new possibilities. 

Myth Three: Case managers always work for the patient. 

The Reality. The truth is that case managers are often juggling competing interests. That’s not a bad thing; it’s just a reality. Case managers must acknowledge that they must balance the rights of their patients/ clients with the payer source. When a case manager acknowledges the competing interests, he or she can move forward with advocacy that recognizes the needs and goals of both parties – the patient as well as the payer source. Ultimately, their role is to "manage the case" by facilitating a win/win outcome for everyone. It is critical for case managers to disclose who they’re being paid by and to explain the rights of an individual to appeal any recommendations that are made. In an environment of scarce resources, case managers can best assist people by ensuring that available resources are used to attain the goals of the individual, as much as the payer. 

Myth Four: The best rehabilitation happens in a post-acute rehabilitation hospital. 

The Reality. The best rehabilitation happens in a setting where the individual is most likely to reach his or her immediate goals. The optimal setting should be suited to the individual’s stage in the recovery process. For example, if a person has significant physical needs and requires advanced equipment, a post-acute setting can be ideal. If a person needs to relearn daily living skills, rehabilitation is most beneficial when it occurs at home. By participating in regular routines with the support of rehabilitation professionals, individuals can make progress in a real world environment. Unfortunately, going home is often viewed as the end of the line for many rehabilitation services. All too often, "family education" is offered as a substitute. An entire industry of family-coping-after-brain- injury resources has evolved. If a longitudinal study examining the true cost of sending people home when they are "done" (as mandated by a payer source) were conducted, it would likely reveal some surprising findings. The cost of readmission to medical settings, mental health services and other system interventions is far greater than one would imagine. In contrast, by supporting people at home by providing services needed for self-sufficiency and community membership, there’s a significant long-term savings. 

Myth Five: Group homes are community based services. 

The Reality. Group homes and other congregate living centers are not "of" the community if they are owned or operated by the same agency that provides the services. If a person can change service providers while remaining in the same living situation, they are not bound by the rules of the provider. Individuals who live independently in a home that they choose have true choice of providers. They are viewed and treated as customers - not commodities. Being "of" the community means being able to live in your own home or your family's home. It means being a friend, neighbor or coworker, not a recipient of services. 

These five myths begin to challenge the dominant paradigm in the field of brain injury. What if there was an alternative perspective? Perhaps there is. Instead of “fixing” a person and sending him or her home, it’s time to consider reversing the sequence. What if individuals who experience serious brain injury were able to go home and work with therapists in familiar surroundings to relearn skills and adapt to changes? By resuming daily routines and defining their own lifestyle goals, the journey to a rewarding and meaningful life just may become a little less arduous. Throughout the rehabilitation process, it’s imperative that we focus on strengths, not deficits and on goals set by the person, not the professional. 

By revealing these realities we can begin to hope that individuals like Joe who experience serious brain injuries will be able to live their life, their way – engaged in the community and the things they want to accomplish. The reality is that Joe and others in similar situations deserve the opportunity to chart their own course and create their own future.

Community Matters: Social Capital the Key to finding a Job

Community Matters: 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 ind...

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

Remembering and Reinventing: Back to Basics.

It's hard to believe it has been 21 years since I lived in a loft in City Market with my two Yorkies, Lulu and Billy Ray. I'd wake early and head out the door with my bag phone (prehistoric iPhone) and my notebook. I didn't always have a schedule, just a list of people to see and places to go.

Between meetings at homes across the city, I'd pull over at the side of the road and retrieve the messages from my $8 answering machine that sat on the kitchen counter of my loft. "Hi, my name is Mary and I am in a nursing home in Olathe. Susan said to call you because you could get me out," or "I am a social worker at the Rehab and I heard you could help me with a discharge," or "This is Jill and I am looking for work as an attendant." It wasn't uncommon to have 70 messages a day.

It took two years to realize I needed to formalize things a bit. I needed a name for my company, Corporation papers and a bank account. I applied for the requisite home health license (with no nurse needed) and provider numbers to categorize what I did so I could pay the rent and buy food for Lulu and Billy. Until then I pretty much existed on a few consulting contracts and my part time job as a student at the University of Kansas.

Fast forward 21 years and a lot of things have happened. There are now two companies, one for case management and one for therapies; we've morphed up to 700 employees and back down to 150. We've lived through 10% Medicaid cuts, a few recessions, and many administrations. We have won awards: Provider of Excellence in Kansas in 2011; National American Brain Injury Society Clinical Award 2010 and named by the University of Toronto for the Top 12 programs in the World for Community Integration of People with Brain Injuries. And the beat goes on, still supporting people to get their lives back and move on.

People ask if we are going to survive and I have to laugh. We have already survived. We have helped over 3,000 people move out of nursing homes, hospitals, rehabs, get jobs and move on. We aren't going anywhere.

Admittedly, it is time to reinvent. Last week it was finally confirmed that the three managed care companies would be providing all case management for the Home and Community Based waivers in Kansas. That is a huge change for us, given we have 23 case managers supporting over 600 people right now. Disassembling our amazing system is far more difficult than it was to build it and those who have been involved in building it, know it was a mammoth task. I don't allow myself to spend much time thinking about the number of relationships that will be affected by this change. I do know it's those relationships that will get us through.

We are working through our own plan to work with the MCOs and the State of Kansas to make sure no one goes one day without a case manager. We are also committed to making sure that no case manager goes without a job. Of course, we are working with moving deadlines and dates, none of which have been confirmed. Managed care is supposed to start January 1st. There are several deadlines along the way (still not clear the exact dates) that determine if the January 1st deadline will work. If it doesn't work, there is no published date or variables to determine next implementation dates. We know we need to be able to adjust to any twist in the road, as we have for 21 years.

Our reinventing means we focus on our great work of community based rehab. Our therapy and independent living skills model gives control back to the person and has amazing outcomes. We save the State of Kansas $21,000 per person, per month by providing up front, intense rehab in a person's own home and environment. That's managed care at it's best.

We will go back to one company, communityworks inc. We will ask people what outcomes they want to measure in their own lives, and we will educate the MCOs about the dangers of the medical model when imposed on the community. We will also continue to celebrate success, have fun and make sure we advocate for what people tell us they want.

We have a lot to offer and will get back to basics, focusing on one person at a time.