A Retreat into Mindfulness

September 3, 2014

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Dear Friends of Full Access,

This was my third year attending the Autism Rocks friends and family camp (aka: The Retreat). For the people who attend, this event is anticipated as a much needed break from the “neurotypical” demands of mainstream society. The retreat is located on a small peninsula in the Siltcoos Lake, near Florence. There are giant trees, wildlife, safe people, and divine densities of stars. There are also activities to choose from day and night: karaoke, canoeing, art, nature walks, live performances, and disco dancing. In this place, people are given the space to truly be themselves without judgment or expectation. One simply shows up as they are in this moment and is loved.

For Some, it Takes Time to Acclimate

10628264_10202684504173957_7175137644606061858_nMy first year attending the retreat, I was nervous. I had been hearing about it for years and wanted to attend, but spending a weekend camping in an unfamiliar environment was intimidating. Finally, after too many excuses, I made it. I parked my car and walked through the camp full of dozens of unfamiliar faces to register. When I wasn’t working my kitchen shifts, I spent a lot of time alone walking through the forest, reading in my tent, napping…I felt awkward. I didn’t know how to connect. I wasn’t sure I would be back again.

548582_10151219292379582_785419594_nThe next year I was employed by Ryan to help with his career as a Dean Martin impersonator. I worked with him and Jed, a Frank Sinatra impersonator, to prepare a stage show for last year’s retreat. At their request, we got a few ladies together and choreographed a showgirl routine for their finale. Dancing in a feather boa to a shouting crowd, on a peninsula in the forest was a blast. I felt more connected than the previous year; I thought I might be back.

But Then We Make Friends

To quote the KindTree website: “The retreat is a time for rejuvenation and solidarity. Autists are accepted and enjoyed for themselves, not forced into a procrustean neuro-normal mold.” There is a beautiful empowerment that comes from this experience. Many of us take feeling relatively “normal” for granted. At the retreat there is no template for normal. We are all normal. We all belong and are invited to join in each moment with love and acceptance. Campers make friendships that last year after year. Every year I see faces light up as friends arrive from afar and tears as they have to say good-bye.

10624746_10202706714769208_1950463685521396722_nThis year, arriving through massive pines and stillness felt like sinking into a warm bath, like an easing of my aching bones. I got there late and it was getting dark, so I hurriedly set up my tent. I could hear The Raventones playing music down at the Chapel stage. I decided I’d get the rest of my stuff later and rushed over roots and through bramble toward the sounds of TR and Randy playing “One Size Fits All”. Friends greeted me from the shadows, silhouettes of happy autists decorated the dance floor, and I felt like I had arrived home.

Over the years, as I released my attachment to fitting in, I began to glimpse what this event means to the autists who attend. I accepted that I am an introvert. I need to spend time by myself and it is socially acceptable to do so, even in the midst of a very socially interactive community. I never expected to find myself experiencing this type of relief. I expected to support others as they found their comfort zones but there I sat, alone, light filtering through branches with softly striped brilliance and I felt more comfortable than I had in a long time.

And Then We Feel Loved

10603528_10152405960664582_4534394436506063432_nI have seen this blossoming happen for both campers and their families. The feeling of being accepted as we are, with no demands to fit in, is a feeling many of these people do not often get the privilege of enjoying. But for these few days we can flap, stim, talk to ourselves, follow others around talking endlessly, rock back and forth, stare, avoid eye contact, shout, laugh, and sing to our heart’s content. We are free to flow and free to allow our loved ones to flow without ridicule or judgment.

And Then…It’s Like Buttah

I cannot speak for other attendees, but for me, the feeling of interconnectedness increases as I let go of expectations and just enjoy each moment as it comes. I did not expect to be floating on the dock at midnight, staring at the Milky Way with new friends. I also didn’t expect to be quoting Saturday Night Live while making crowns out of old telephone cables, but have you seen Barbara Streisand in the Prince of Tides?!?! It was like buttah. Mindfulness comes naturally in this environment. We arrive ready to be present in each moment without reservation. It is this presence of mind that allows each individual to shine and blossom in their own unique way. We do not fly off to some exotic retreat to study mindfulness. We retreat to the forest near Florence, Oregon. We get dirt on our shoes and eat s’mores. We smile and sing and scream, right here, right now.

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Melissa Farley
Personal Agent


It’s the people work, not the paperwork

August 27, 2014

Dear Friends of Full Access:

In our offices right now, as is true throughout the state, there is a lot of hustle and bustle.  There are new forms for TNT payment systems.  Clients and providers everywhere are doing more paperwork!  We have been hosting trainings to fill out forms.  We have hired extra people to manage all the boxes of paperwork.  We mailed thousands of pieces of paper out the past two weeks and have as many coming back in.  Here was one day of getting forms to process and send:

And here was one day of sending forms out for people to complete:

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Everyone is struggling with all of these changes.  We are getting hundreds of phone calls about all the paperwork and the payment system.   Full Access staff are working long hours to make sure all the changes go okay.  Everyone is pitching in to do what we can!  And with all of this going on, we have moments that bring us to our knees– not about the paper, but about the people.

It has happened in our office many times in the past.  This week one of our Personal Agents, Marie Sweeten, got a phone call about the death of her client Beth.  I only met Beth once but I was very touched and inspired by her.  Mostly what inspired me was how joyful she was to see Marie!  These moments are precious and always a reminder of our mission and why we do what we do.  As you can see by what Marie says, Beth has given her and all of us a gift that is long lasting:

One of my favorite parts of being a Personal Agent is the interactions I have with my clients.  A couple months ago I had a meeting with Beth, my client of 8 years and one of the sweetest people I’ve ever known.  Amidst all of the signing of the piles of required paperwork, Beth was excitedly telling me about her recent birthday.  She was 29 now.  Teasing her a little, I said “Ooh!  You’re getting old!”  But being her ever-positive self, she took that as a compliment, smiled and said “Thank you!”  It made me laugh, but it was also eye-opening.  Beth had more than her fair share of challenges, so for her, getting older was an accomplishment.  She never let that get her down, though.  She just radiated sunshine everywhere she went and with everyone she met.
    
Beth died this week.  That’s my least favorite part of being a Personal Agent.  Losing people is never easy.  It was a shock and it’s still sinking in.  Never again will she greet me with multiple hugs and announce “This is my caseworker!” to everyone within earshot.  I’ll miss those hugs, her smile and her positive energy.  When I think of Beth, I’m reminded of this quote:
“Let the people you love know it.
Say it in your own way. But say it.
You’ll brighten their day.
And grow your heart connection.
Life is short. Let your love be large.”
[Karen Salmansohn] 

Beth lived her life like this every day.  If you were loved by Beth, you knew it.  Every time I saw her, she brightened my day.  She touched so many people in her short time on this earth.  Her love was large and we are all better for having known her.      

Beth

Godspeed Beth!

MT, CEO

 

 

 

 

 

 

 

 


Celebrating Success!

July 17, 2014

Dear Friends of Full Access:

It has been quite some time since I wrote a blog!   Having the chance to share in some fun evening events this week in the Bend area, I wanted to share how great our communities are in supporting our Mission.

20140716_205237_resizedFirst, Katie Rixe, Board member and fundraiser for us, hosted an appreciation party for a great group of volunteers Tuesday night.  Katie has coordinated the steering committee for the Beth Rixe Service Center the past few years, devoting her time and energy to the vision of a center supporting our clients.  This party was a chance to thank committee members and celebrate successful fundraising events this past year.   With a luau theme and delicious food, this gathering of 25 friends gave us the chance to thank donors for their time, participation and dollars.

bicycles_posterOn display at the party were two electric bikes we are selling raffle tickets for.   This is a perfect opportunity to win a set of bikes for you and a friend to explore your community.  For just $10 per ticket, or 3 for $25, you have one chance in 2500 to win!  Pretty great odds for a raffle of a nearly $6000 package.  Tickets are available at both our Eugene and Bend offices, as well as on our website.

The second great event was gathering clients, providers, friends, family and staff at the Bend Elks baseball game Wednesday night!  This was a chance for us to share stories, have bar-b-que and enjoy the Bend community at large.  One of the stories I loved was from our client John, who is a great fan of the Elks team.   He has been waiting for nearly 10 years to have his high school class reunion, which is now scheduled for next weekend at the very same ballpark.  And a bit of history was shared here since many of our fund raising committee members are Bend natives.  The Elks ballpark was the Bend High School park, so very nostalgic for them to gather and watch the game.

We had a20140716_193614_resized very special moment when Board member Nick Newport threw out the first pitch!  I was so proud of him.  Nick has shared broadly that just a couple months ago he was in a serious car accident.  His recovery has been challenging but he is grateful he is getting through this.  There were miraculous circumstances in the accident that helped saved lives.  Even though one person was killed in the wreck, Nick and his friend survived.  Nick felt very strongly that reporters who witnessed the accident made the difference for him.  That one brief moment changed his life, and certainly changed the lives of everyone involved.  For him to get out in such a public forum and throw the first pitch showed how very courageous Nick is.
Nick is a perfect example of the kind of person we work with at Full Access.  He shows courage and grace, and a willingness to participate in our Mission.  In just these few days in our agency, hundreds of people were touched, moved and inspired by such courage.  Whether a Board member, client, staff, family member, provider or friend, we all contribute to the success of our agency.  Congratulations to those of you who lead that this week, Katie and Nick!

MT, CEO


Service From the Heart is Universal

May 28, 2014

Dear Friends of Full Access:

We recently had two guests in our home from Pakistan, who were in Oregon for a special program sponsored by the U.S. Embassy in Islamabad and delivered by Mobility International: USA.   These women with and without disabilities in leadership positions have been changing the face of women’s rights in Pakistan, and shared their expertise, efforts and experiences with the U.S. community in Eugene from May 8-22, 2014.  The program was designed to build the capacity of women leaders to promote the inclusion of women and girls with disabilities in the mainstream women’s rights movement, as well as the disability rights movement, in Pakistan.

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Delegation of women from Pakistan sharing their stories

Our two guests were Najma Shakur and Saira Shams.  Even though we are from vastly different cultures and locations, we found much in common personally and in our commitments to advocacy and service.  We also discovered how differences are easily worked through with enough communication and a bit of patience.  Often times Saira served as our translator, since she speaks three languages including English!  In addition to that, we used our body language a lot more, looked things up on the internet together and used the tools MIUSA provided for communicating.  We sure enjoyed the conversations, sharing meals, and driving around sharing our community.  I especially appreciated Najma’s gift of making a traditional Pakistani supper one night!

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Najma (on the left) and Saira at our home

There was so much I valued in this experience that relates to my work at Full Access.  Saira and Najma work tirelessly to ensure people with disabilities and others are fully included in their communities and important decision making for the future of their Country.  One of Saira’s goals is to be a member of Parliament, and I am convinced she will achieve that!

Najma is the Founder/President of the Women Welfare Organization Poonch (WWOP).  She founded this organization in 1995. The mission of WWOP, a grassroots women’s organization, is to enable and assist marginalized, underprivileged, and underserved populations to achieve their development goals and rights in society. As the President, Najma oversees program development and management, and spearheads initiatives to ensure that women with disabilities are included in her organization’s programs and activities. Currently, WWOP is working on policy reform for inclusive education in the AJK province, and conducting a research and advocacy project on education for people with disabilities with a specific focus on continuing education opportunities for girls with disabilities.

Saira Shams is the Coordinator of Women with Disabilities Group, Special Abilities Development Association (SADA).  This organization is a disability rights organization focusing on advocacy, awareness campaigns on the implementation of the Convention on the Rights of Persons with Disabilities (UNCRPD), and policy reform. In her role, Saira networks and mobilizes community members and educates the public on the rights of women with disabilities through radio and TV talk show.   It is quite obvious she has the energy and charisma for her public role!

Pakistani guests getting a tour of the Full Access offices with CEO, Margaret Theisen

Pakistani guests getting a tour of the Full Access offices with CEO, Margaret Theisen

When listening to anyone’s story, it is an opportunity to discover how apparent differences can become strengths.   In a short visit with these two women leaders, it gave me such inspiration for the work we do.  Whatever the struggles or challenges, it’s important to notice the bigger and broader picture.  And also, the deeply personal journey each of us has in our work toward justice.

MT, CEO


Who Moved My Cheese?

May 8, 2014

Dear Friends of Full Access:

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I love this book!  I have been reminded again about the challenges of change when re-reading it.  Here is just a brief statement about the book written by Spencer Johnson:

“Most people are fearful of change because they don’t believe they have any control over how or when it happens to them. Since change happens either to the individual or by the individual, Spencer Johnson shows us that what matters most is the attitude we have about change.”

For me,  I am having to work on my attitude about change and it is not an easy challenge!   I definitely feel that the changes happening are out of my control.  I think there is too much happening at once for everything to go well. As Who Moved My Cheese points out, change can be difficult.  We can deny it, fight it, be smothered by it and even try to ignore it.   Change can also be confusing, frustrating and overwhelming.   Sometimes all three.   What I am hoping for and working for, is to make sure our mission stays first and foremost in the thinking and work of myself and all our staff.   I was reminded of this in a very painful way this week.  One of our long time providers called to ask me about what is going on.  We both expressed deep concerns for our clients, their families, and the movement of self determination that has been our calling.  As two people in this system that experience our work as our own personal missions, we cried a bit, laughed very little and recognized we are in this fight together.  And, it does feel like a fight.

So as all these changes go on around us, and within our agency, and particularly with client services, the “main thing is to keep the main thing the main thing”.  And that is our attention to our clients, their supports and the self determined future they deserve and have been promised.  I have to say truthfully, I think our Personal Agents and the support staff at Full Access have been SUPER AMAZING!  Against the odds, they continue to problem solve and ensure our clients have the supports they need.  We continue to be successful (not perfect!) in this regard, so please let me know if you think differently!

To speak to some of the specific changes upon us, here are reminders for clients and providers both!

 

For our clients there are a couple things to pay particular attention to.

  • There are 35 working days left between now and the end of the current fiscal year, June 30, 2014. Over the past year, that date has been a target for many changes in the Oregon’s developmental disabilities brokerage system.  This includes significant changes such as ensuring all 7,500 or so brokerage clients have been assessed with the new Functional Needs Assessment, ensuring that all providers are signed up in the state’s payment system, and preparing for having the state take over direct payment to all brokerage providers.  For Full Access and other brokerages and counties, clients are changing fiscal intermediaries as well.
  •  Be sure to respond to your Personal Agent’s (or a state worker’s) call to complete the new Functional Needs Assessment. It’s essential these are completed for everyone by June 30th. This allows the state to draw down increased federal funding via the new K Plan.  Be ready to revise your plan to make some language changes. Your PA or extra staff we temporarily hired will contact you about this.
  • If you have a provider, be sure that s/he has filled out a Provider Enrollment Agreement. We want to be sure they can continue to get paid after the state takes over payment (currently planned for July 1st.)

 

If you’re a provider of brokerage services there is quite a list!

  • Make sure the customers you serve have scheduled a Functional Needs Assessment with their PA (or a state worker.) If they need some support during the assessment and would like you to assist, offer your help.
  • If you have not already, you must apply for and receive a Medicaid provider number. Sign up by filling out the Provider Enrollment Agreement form as soon as possible.  The website for the PSW forms needed is http://www.oregon.gov/dhs/spd/Pages/adv/hcc/tools_psw.aspx
  •  If you have already applied for a provider number, but haven’t heard back from the state, please contact them directly at 1-800-241-3013 or email  SPD.ProviderNumber@state.or.us
  • If we’ve contacted you about updating your Criminal History Check, be sure you respond quickly. All PSWs must have a CHC completed every two years. You cannot be paid without a current check on file.
  • Attend one of the upcoming Personal Support Worker webinars. There are currently three scheduled. The webinars will give you basic details on the state’s payment system (eXPRS) and how the way you’ll be paid is changing. See details below.

Once registered, participants will receive an email with the training site link, conference phone number and instructions on how to connect to the training on the date you are registered to participate. If you have questions, contact Julie Harrison at JULIE.A.HARRISON@dhsoha.state.or.us

 

I am sure there will be more to come on these changes, so stay tuned!

With thanks to Larry Deal at INW Brokerage for writing much of the detail in this blog!

 

MT, CEO


Israel Partners Continue Positive Change

April 16, 2014

Dear Friends of Full Access:

Israel partners in Washington DC

Israel partners in Washington DC

Many of you may remember our partnership through MIUSA, involving an organization called Bizchut from Jerusalem, Israel and Ono Academic College.  Once our exchange was finished, one organization from our team was given the opportunity to receive a grant to fund a project that involved expanding advocacy work for people with disabilities.

Bizchut was chosen to receive this small grant, and has made strides in the goal of placing independent advocacy for persons with intellectual disabilities on the agenda in Israel.  In other words; having people with intellectual disabilities lead the way advocating for civil rights as well as the right to make the choices affecting their lives.  It is advocacy for the same rights of all people with disabilities in Israel.

A self advocate that was a part of our team, Shmulik, is heading up this project.  He has the support of someone that works at Bizchut, but he is blooming into a strong advocate and leader.  His primary goal is to create his own organization that supports social change for people with intellectual disabilities and is run by people with disabilities. With consistent support, Shmulik has gained understanding of what it will take to do this and continues to work toward this goal.

Shmulik

Shmulik

Shmulik and his support person participated in a conference that was organized by the Commission for Equal Rights of Persons with Disabilities, which was attended by 700 people.  This conference supported the opportunity to network and learns more about the barriers faced by people advocating for disability rights.

Shmulik and his support person also gave a lecture at the conference for social workers who work with people with disabilities.  His lecture focused on what he learned from his trip to the United States and participating in the exchange with Full Access.  Specifically, how our brokerage system allows people receiving supports to choose what they would like to get for supports, but more importantly how they want to live their life.  Currently in Israel, individuals do not get any say in what supports they receive.  They are given a guardian who makes all the decisions for them, with the person needing support getting no say in the decisions that affect their life.  This is the exact thing that our partners are trying to change.

Shmulik is attempting to build relationships with other organizations in Israel.  Many of his outreach attempts have been successful.  A challenge in the future is getting a large parent organization to see the benefit of letting their “children” with intellectual disabilities make decision for themselves (good or bad).  A lot of fear is going to have to be addressed, and it will be a long, challenging journey.  However, if Shmulik and his team are successful, they will have an important ally in changing the entire system.

A lot of progress has been made, and there will be lots more to come.  Shmulik is building his core group of leaders, all of whom have a disability, to lead this movement of new activists.  He continues to teach advocacy and social justice at the teacher training college in Jerusalem.  He has developed a Facebook page to expand his group and communicate with individuals interested in his organizations work.  Over time his group will grow and blossom into an organization, and that organization will continue to make waves of changes for the benefit of people with disabilities in Israel.

I feel honored to have met these people and to have had a tiny part in such a hugely important movement for the rights of persons with disabilities.

-Stephanie Blum, Personal Agent at Full Access

Stephanie in Israel with Naama, Naama, and Shmulik

Stephanie in Israel with Naama, Naama, and Shmulik


These Times They Are STILL a-Changin’

April 10, 2014

Dear Friends of Full Access:

At this very moment as I write, all but 4 of our Full Access staff are in a training about the next round of changes in our clients’ plans, service agreements, job descriptions and internal accounting documents.  We have had similar trainings over the past year with the implementation of the new K Plan service system we are navigating.  And, we will have more.  Navigating is a word I am using a lot lately.  As new parts of the change are shared or clarified, we need to navigate differently in the changing system, which means “find the way”.

As we have been “finding the way” the past year I feel mostly satisfied with how this has been felt by our clients and their families.  And I would very much like to hear from you if you feel otherwise!  That has been the most important part of our mission the past year: to ensure the changes in the system did not cause more problems for people, but actually may have enhanced their support.  I know of some cases where it did enhance services!  This is a great thing about the changes!

We actually still have a long way to go with the new future the K Plan brings.  Right now, five state staff have started conducting assessments for about 225 Full Access clients.  These assessments are on top of the typical work load for our Personal Agents, which is why the state is helping.  This is a great way for us to build relationships with state staff and for our clients to meet people from the state!  We appreciate the Department of Human Services reaching out in this way!

After those assessments are done, it is the responsibility of Full Access to complete a plan revision with all these clients within 60 days.  These revisions will have new language due to the K Plan, and when we have revisions this often means new service agreements, job descriptions and updates to other plan documents.  We also need to redesign how we account for our clients expenditures.  Just to give one example of the expenditure change, we used to have 15 codes to account for and now we have almost 60!  This causes us to have more complicated systems and a lot more work.  I really want to thank all Full Access staff for “finding the way” to keep our clients’ supports intact during this very difficult time.  I am also grateful we were able to hire 5 temporary staff to do these extra plan documents.  They all have excellent experience in our field and have been friends of ours for years.

This navigation is affecting all parts of the Intellectual and Developmental Disabilities services in our state.  Some parts are affected more than others.  This means some people are more affected than others.  The important thing is we all stay the course toward our mission.  Even at the national level we see changing times.  Tuesday this week, Sharon Lewis from the newly formed Administration for Community Living met with our state IDD coalition.

Sharon Lewis, on the left, explains federal issues to the Oregon IDD Coalition

Sharon Lewis, on the left, explains federal issues to the Oregon IDD Coalition

One of the most important things shared was regarding something she called “incredible and ground breaking”.   This is the clarification and change to our understanding of what it really means to support people in a Home and Community Based Setting.   Full Access, as well as all brokerages, was designed with funding from federal law regarding Home and Community Based Settings.  With this type of funding we are required to meet the law.  With new language about this, it means we are getting a more specific understanding of home and community regarding these funding streams.  What we all have ahead of us is determining what “settings” are in the community and what are not.  Any settings that isolate people like our clients, is not in the community.  I will have more to say in the future about what this means as I understand it better myself.  There is a website that has excellent information about this.

http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Quality-of-Care/Quality-of-Care-HCBS.html

For now, I will leave you with a few words from Bob Dylan, who obviously knew 50 years ago, that even now we would be facing changing times!

MT, CEO

 

Come gather ’round people

Wherever you roam

And admit that the waters

Around you have grown

And accept it that soon

You’ll be drenched to the bone

If your time to you

Is worth savin’

Then you better start swimmin’

Or you’ll sink like a stone

For the times they are a-changin’.

 


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