Sitting in a clean and bright room, Jonathan meticulously moved the yellow magic marker.  He sat hunched close to the table in order to more carefully observe the imprints that spread over the picture of 4th of July fireworks.  Like most artists, Jonathan studied each line and mark as he made it.  After a few moments, Jonathan lifted his large frame to greet us with his steel eyes and expression-filled face.  Yet, he never stopped his art work.  He carefully stayed within the lines, making the colors smooth and sleek, no easy task with magic markers on plain paper.

As we walked into his room, her staff smiled while Renee Subee greeted Jonathan before she spoke to the paid personnel.  This simple gesture by Ms. Subee, the manager of The Arc in Wahiawa, Hawaii, spoke volumes to me about the quality of care and attention given to the individuals who receive services at this sheltered workshop.

Renee–you feel comfortable calling her by her first name–showed us each room where people with intellectual disabilities are trained.  Every room had a fish tank inhabited by at least one bright yellow fish.  With the intensity of a hungry feline, Debbie stared at the fish swimming until we entered her room; and then her attention was drawn to her legs.  Shy and self-conscious, Debbie only caught quick glimpses of us.

Community inclusion is more than a buzz word for this small group of folks.  Each morning, the ingredients for Meals on Wheels are delivered to the workshop.  The individuals assemble the lunches and then deliver them into the surrounding homes.  “It is such an important part of our out reach,” said Renee. “Our consumers go into the homes of the elderly and distribute the meals.  It helps everyone.  The consumers love it and so do the men and women receiving the meals.”   Explaining the purpose of their thrift shop, she said, “We keep the cost of our merchandise very low so that we can give back to our neighbors.  This community is very important to us.”

The location of the Wahiawa Arc isn’t the most desirable section of town. However, you wouldn’t know it from the pride Renee and her staff take in their location.  “We are in the perfect spot,” she bragged.

Reluctant to leave, I felt that I’d known Renee and her small community for years.  But Renee’s day isn’t over when the last consumer is loaded on a HandiVan and leaves the parking lot.  Ms. Subee is more than the Wahiawa ADH Manager, she is also the independent living coach for about 10 people who live in the upstairs apartments of the two-story building.  “I’m on call 24 hours a day.  Our residents are independent; therefore, I’m here for questions and emergencies.”

It was apparent that Renee Subee and her staff enjoy the amazing wonder of the unique people they serve.  Her humor and joy permeate every inch of the facility.  I, too, left smiling and happy that there can be such joy in working within our community, even in Paradise.

Of course, everyone is all for removing people from institutionalized settings.  In the state of Florida I don’t believe there are thousands of people in institutions, unless you are talking about group homes–which are now homes with a maximum of six people living together with staffing.  Pretty sure this would not qualify as an institution.

Is the only alternative is putting mentally challenged persons into an apartment by themselves, where they are isolated and lonely, with minimal staffing, in the worst sections of town?   Then, yes, I believe–from the horror stories I’ve seen first-hand–this is irresponsible social work.

As an alternative, senior citizens have found that living independently when you are weak and vulnerable is a recipe for disaster, even if it is much more cost effective for the State. That is why we now have communities for senior citizens.

Shouldn’t we copy something that is proven to work, rather than doing social experiments on our most vulnerable population? I’m not sure that it wouldn’t be just as cost effective as living independently. People would be able to choose whether they would live there or not and full-time oversight could be provided by pooling State resources.

Many families are beginning to feel that this paridiam would be a win-win for everyone.  What do you think?

On Sunday, I received a “comment” from Iran regarding the “Give Us a King” entry of last week.  The words were simply, “Pray for revolution.”  My heart was torn.  Of course, I left the comment.  As all of us know the uprising in Iran has been driven and publicized by the most unconventional means.  Tweeter has played a big part.  The world has seen the young woman, Nada, who was killed while walking with her father and other shocking images transferred via cell phones.

Yet, my mind could not help but go back to a meeting that I was told about by a head of a ministry for mentally challenged persons living in another state.  He had attended this conference several years ago.  It was a Christian men’s rally and the emphasis was reconciliation with the black community.  There were prayers and forgiveness and confessions.  God moved in a powerful way.

This brief acquaintance of mine had come to Florida on his way home.  He had stopped to visit DisneyWorld with his family and to see what is happening in Central Florida in regard to ministry to people who are mentally challenged.  In the debriefing that often goes on after a large conference, the pastor sat quietly stoic.  His head was lowered and he rested his arms on this legs as he confided that in the midst of the meeting he was shaken because most of what was begin discussed is still openly and unashamedly happening to people who are mentally challenged. 

I am proud of President Barak Obama.  I’m a staunch conservative and I’m leery of most of the social programs that he supports; but I am incrdibly proud that we have a black president.   However, even he isn’t shy about using a degrading “Special Olympics” comparison.

From the highest offices to degrading movies and slang on the streets, the mentally challenged community still suffers the most degrading and ungodly discrimination.  And I wish it stopped there. 

 Again and again, the most vulnerable are chosen to receive the most budget cuts.  It is considered good social work to put a mentally challenged person, in a low rent apartment in extremely horrific parts of town, with little money and virtually no supports.  What other group of people in America would be victimized in this way? 

A couple of years ago, a good friend and a member of Special Gathering was encouraged by her supported living coach to move from her safe and secure Adult Living Facility (ALF) into another town in a section of that city which was considered the worst part of our county.  She was told that it would be good for her because she would be around younger people.  Her family and all her friends were against the move but her social worker wanted her to “taste the joys of real independence.” 

The first night Kathy’s next door neighbor was shoot and killed in a gun battle that took place in the hallway of the apartment complex.  Kathy became a virtual prisoner in her own apartment, afraid to even venture outside the door.  Her mother could no longer do the twice-weekly drop-in visits that meant so much to Kathy’s mental stability.  Because Kathy was wheel-chair bound, her family and friends could no longer rescue her when she fell.  911 was available but it wasn’t the same. 

Kathy found that the “young people” who lived in her apartment were prostitutes and criminals.  Their vile lifestyles were abhorrent to her.  Of course, she had lost her much-sought-after apartment in the ALF.  She had to endure the fear and danger of her new situation for more than a year before another apartment became available.   

This is only one story.  One incident.  However, it is an all too-common picture.  Yes.  Yes.  Yes.  There are responsible social workers but many of them are caught in a system that demands an inclusion paradigm above all other considerations. 

Therefore, my request today is pray for the non-revolution within the mentally challenged community.  These vulnerable people will never rebel.  They want approval and have few demands.  Pray for a most vulnerable people who suffer discrimination, abuse and wrong everyday and it isn’t in Iran.  It may even be in your state, in your city, in your community.

This is an excellent comment received from Tony Piantine regarding the post on Saturday, June 13, and planned residential communities.  I know not everyone looks at the comments so I wanted you to see this.  Hooray for Tony!  Visit his blog for more insight on disability issues from a Christian perspective.

When a slave is given a choice he is still a slave. Moses lived in the ruling culture of his time, he also lived isolated from society. He did not really choose or live until he accepted God’s opportunity to choose to be free.

I see the importance of issues that affect everyday life, such as where to live and whom to live with.  Yet we must understand that people with disabilities are in bondage to a system that keeps them from the full, free experience where they can really make decisions. Decisions based on policy, philosophical biases, social workers’ bias, or whatever the latest funding source that is provided, are not based in freedom that comes from God. 

The Christian community needs to wake up see the value of people with disabilities.  We must give them opportunity for a real choice of living in Christian community where real freedom to choose is understood only to come from God.

I have a check list:

  • Water
  • First Aid kit
  • canned goods/snacks
  • ice
  • dry ice, if possible
  • gasoline for the generator
  • clothes and personal items for evacuation
  • one item you think you can’t live without
  • family photos
  • bills and financial information
  • candles and matches, flashlights and batteries
  • kerosene for the lanterns

I also include a few things that I wouldn’t allow myself to have in ordinary times, like gooey, yummy treats that will throw my system out of whack for a couple of hours.

However, my greatest concern isn’t what I will do in a hurricane.  It isn’t even how I’ll take care of my physically frail husband because we deal with his disability everyday and we have a plan. 

What about the most vulnerable in our communities?

What about the most vulnerable in our communities?

My concerns is what will happen to the members of The Special Gathering, a ministry within the disability community.  We do chapel services and Bible studies for persons who are developmentally delayed.  They remain a vulnerable population. 

The members who are in group homes or with their families are of minimal concern. Eric will mutter and studder, fume and prance; but in the end his parents will take him to a safe place and he will be calmed.  No.  It is the people who have been placed in apartments in this great inclusive social experiment that give me sleepness nights. 

It is Saul who believes everything that his self-proclaimed, “hair-brained” companion tells him.  Saul believes that taking his companion’s 195 pound Rockwilder dog would be a better pet for him than a cat.  Even though he’s job requires him to be gone all day and he lives in a small one bedroom apartment with no lawn.  Why would he believe this?  Because she told him it would be a good idea; and she can no longer take responsiblity for the dog.    

It is Katy who lives in her own house and does weekly trips to the hospital emergency room with fantom or self-inflicted pain to get attention and more pain-killing drugs.  I feel a responsiblity to the married couple who no longer comes to SpG but whose supported living coach makes emergency trips to visit her children in NC during each hurricane disaster. 

It is during times of tragedy that I wonder into what kind of social-action plan have we thrown the mentally challenged community?  Where are the helps when they seem to be needed most? 

Do you have any answers to these questions?  Is your state prepared for the disasters that hit every community in regard to people who are most vulnerable?


Savings or Reserve?

Can you imagine how confusing it is to be mentally challenged and still have to pay and juggle bills?  Each month I start out with a plan that seems great only to be side-swiped with this painfully complicated bill-paying maze.  The bill-paying maze includes my desires, needs and wants.  I juggle delayed gratification with the “I Want It Now” demand that screams from my gut and overtakes my head.

There are the emergency break downs like an air conditioner followed by the shocking sticker price.  I must include the impulse buying that jacks up the amount of the grocery bill and my Wal-Mart check-out tab.  Can’t get through the month without the necessities and the niceties.  Merging the bottom line of my checkbook with the bottom end of my appetite seems impossible to accomplish.

I am the Area Director of The Special Gathering of Indian River.  We are a ministry within the dvelopmentally disabled community. Our goal and purpose is to evangelize and disciple people who are mentally challenged. The two programs which I oversee minister to at least 100 people with disabilities each week. 

 Many of our members are either living on their own or would like to move into their own apartment as quickly as possible.  The mantra is “it’s your choice.”  Of course, there is an independent living coach who comes in once a week for a couple of hours to insure that the checkbook balances.  Yet it is the complications of finances which concern me. 

Perhaps my concerns stem from the reality of my own bank account.  I thought this would be a great month with lots of excess change in my pocket.  That was prior to a large–very large–bill appearing in the mailbox.  My phone broke and had to be replaced.  In addition, my husband and I are feverishly saving for a new/used minivan to be able to transport our Special Gathering members. 

As I peeked into the Howard banking account balances on the Internet this afternoon, I couldn’t help but wonder how our members function as well as they do. I also wondered if there is more that we can and should be doing to help teach Christ-like stewardship of funds.  Is delayed gratification a concept that should be emphasized or left alone?  In the past, we’ve not spoken much about the subject of financial stability but perhaps it’s an area of training that is needed and wanted.

What about your programs?  Are you teaching stewardship?  Where are you getting your teaching materials?  What are the scripture texts that you use?

Yesterday, I attended a Persons with Disabilities Assessment Project, Emergency Preparedness Workshop at Cocoa Library. Chip Wilson, Statewide Disability Coordinator for Emergency Services was the main speaker.   While Mr.  Wilson was interesting and even entertaining.  His presentation was pretty rudimentary.  Here are the things I gleaned from Mr. Wilson:

1)  Have a plan.

2)  Implement your plan.

3)  Contact anyone who needs to know your plan.

4)  Both public and private emergency shelters must be wheelchair accessible and open to the general public.

If you have any questions regarding accessible emergency shelters you can contact Chip Wilson at 850-413 9892.  His cell phone number is 850 264 4705. 

These are some of the things I learned from the Brevard County workers that were new to me:

1)  You must register each year for Special Needs Shelter placement. 

2)  To obtain a registration form, you can go to this link, or call Lacie Davis at (321) 637-6670.  

3)  You must register each year for Special Needs Transportation to a General Shelter or a Special Needs Shelter. 

4)  The Special Needs Transportation request is on the Special Needs Shelter request.  Again, here is the link. 

5)  You can get Special Needs Transportation FROM the shelter, ONLY if you had Special Needs Transportation TO the shelter.  Therefore, if your independent living coach or your parent or agency person takes you to the shelter, they must bring you home from the shelter. 

6)  NOTE to supported living coaches:  If you take a person to shelter, they cannot get home on the SCAT bus or with other public transportation.  You must provide them with transportation home from the shelter.

7)  Special Needs Shelters are for medically fragile people.  You will not be accepted into a Special Needs Shelter, unless you are medically fragile.

8)  Cots are not provided in general public shelters.  Bring your own bedding (including a cot, if you need it.) 

9)  It is still an APD requirement that an independent living person be accompanied to any shelter with a companion.  The person who will accompany your consumer should be part of their Emergency Preparation Plan.  Supported-living coaches or support coordinators should insure that this companion cost is included in the Support Plan.

7) If you have any questions regarding this, call 211.  This is an excellent resource hotline.  These volunteers are knowledgeable and they can get you in contact with the person to whom you need to talk.

Interesting sidebar, there was only one support coordinator and two independent living coaches who attending this meeting.