August 2008


Ready or Not--Here I come

Ready or Not--Here I come

I love change and moving furniture and being involved in a dynamic organization like The Special Gathering that is constantly looking for ways to make things better and improve.  As a ministry within the developmentally disabled community, there are a myriad of things to learn and experience.  Each day must be a new beginning and adventure.  Though our mission remains focused on discipleship and evangelism, the way we do things is open to discussion and growth.  This brings me a lot of pleasure.

However, there is a down side to change.  That comes when you are asked to change at the last minute and you ain’t prepared.  That was the opportunity we had on Sunday and it turned into an exciting adventure.  First United Methodist Church of Melbourne, our gracious host church in South Brevard, was having a wonderful celebration with all the ministries of the church participating.  Because we must catch our buses to go home, it was decided that we would not have our choir sing or attend the worship service. 

Yet, during preparation for our worship service, we were approached by the pastor and he asked that our choir sing at the beginning of the joint worship service.  “Sing the song you were practicing a few minutes ago.  It sounded great,” the Senior Pastor, John Denmark, requested.  My concern was that the choir had only sung that song about five or six times.   I don’t mean that we had practiced it during six rehearsals.  I mean that we had only sung this song a total of five, maybe six, times.

Singing a new song after so few rehearsals would be a feat for any choir but our members are developmentally delayed.  It seemed impossible.  However, the choir was more than game. “They can’t sing.  They aren’t wearing their uniform,” was heard from several naysayers.  I admit that Stuart’s shorts weren’t appealing to me.  Yet, it was a celebration and this is Florida where semi-formal wear always means clean jeans. 

Leslie is a committed Christian who would be singing the solo for this song in the Christmas play where we intended to sing it for the first time.  Leslie’s smile is amazing and her willingness to cooperate is legendary.  But Leslie’s voice has such a narrow range that most people would call her a monotone.  I found that this song matched the few notes she is able to sing.  However, did I go so far as let her sing during the opening of a celebration with about 1,500 people?  My decision was yes.  And no one was disappointed, especially Leslie.  The tenderness and compassion displayed in her facial expression and especially in her eyes told the listening congregation that this young woman loves Jesus with all her heart. 

I was so proud of our choir but I was especially excited for Leslie.  Excellence is vital in a performance but love is much more important.  Leslie has a terminal disease and we could lose her any moment.  I’m so pleased that 1,500 people could see and witness her desire to please her savior. 

Ready or not–we came and we sang and I’m so happy we did.

Has there been a time that you stepped out when you didn’t feel prepared?  What were the results?

Photo by Volar

Yes, the Howard family sat on our home with Fay beating us up from Monday morning until Thursday.  Living two blocks from the ocean, she just languished over our small beach town and whipped and blew and stomped and spit.  She pulled into the ocean and came back with her tail-end bumping and knocking us some more. 

Thanks to the wonderful renovations and hurricane hardening done by Able House Construction and the owner Brad Shea, our home was hurricane ready and we suffered no damage to our house.  We did end up with a room-sized bougainvillea in our pool; but that was minor compared to previous hurricane damage inflicted to our home.

I had written two blog entries anticipating that our electricity would go out.  Well, other than a couple of minutes here and there, we didn’t lose our electricity but we did lose our telephone connection from Wednesday until late Saturday.  I am still on dial up; therefore, we had no Internet connection.  However, our phone is back and so am I.

I had a great conversation with Steve, a choir member and deacon at Special Gathering, on our way to chapel program this morning.  Special Gathering is a ministry within the mentally challenged community.  We have Bible studies and chapel services for our members, emphasizing discipleship and evangelism.  Steve and I decided that we weren’t ready for retirement.  We are too mean and grumpy having to stay at home and do nothing but house work.  Steve groused, “I missed going to work.”  And I agreed with a irritated groan. 

Without my Internet connection, there was so many things I couldn’t do.  As a small ministry, we find that the Internet allows us to do many things that would be impossible otherwise.  It was wonderful to have Fay gone.  The only problem is that I now have more work to do than I can accomplish because I lost a full week.  Some people can’t be satisfied.

What about you?  Have you had a week that nothing was accomplished only to realize that you were left with an avalanche of tasks to accomplish?  How did you get everything done?

 This is an e-mail I received explaining your right to appeal your Tier Placement.  It also gives your great information regarding how and why to start the process.  As always when I cut and paste, I never know what the format will turn out to be but the information is what is needed more than a pretty entry.  Thanks for your patience.

Advocacy Center for Persons with Disabilities, Inc.
 Your Rights Regarding The Implementation Of The

APD Tier System: Challenging Tier Placements

In 2007, the Florida Legislature amended section 393.0661, Florida Statutes, to implement a four-tiered waiver system to serve clients with developmental disabilities in the DD and Family and Supported Living Waivers. APD published a set of proposed rules to implement the tiers and held a public hearing on April 24, 2008. Four waiver recipients, Southern Legal Counsel and the Advocacy Center for Persons with Disabilities, Inc., filed a challenge to the proposed rules: 

 

BACKGROUND

 

Moreland vs. APD, DOAH case number 08-2199RP. The hearing on the proposed rule challenge was held on June 24 and 25.

CONCLUSION OF THE CHALLENGE TO THE PROPOSED RULES

On August 6, 2008, the Administrative Law Judge issued the Final Order in the case finding the proposed rules valid. APD may now finalize and implement the proposed rules.

WHAT YOU SHOULD DO NOW

APD will send out individual notices informing you of your tier assignment. In the notice, APD will include information about your rights to challenge the tier assignment and about working with your support coordinator to choose the services that are most important to you to stay within the limits of your tier assignment. At the time that you receive your notice, if the tier assignment significantly affects the services you are receiving you may challenge the assignment.

If you challenge the tier assignments, services cannot be reduced until the hearing process is concluded.

APD has posted information on its website, http://apd.myflorida.com concerning the procedures they will use to implement the tier system.

YOUR RIGHTS

TO CHALLENGE YOUR TIER ASSIGNMENT BY REQUESTING AN ADMINISTRATIVE HEARING; and

TO HAVE YOUR SERVICES CONTINUE IF YOU REQUEST AN ADMINISTRATIVE HEARING WITHIN 10 DAYS.

2

DECISION TO CHALLENGE TIER ASSIGNMENTS

Some things you should consider in making the decision whether to challenge the tier assignment are:

You may challenge

the tier placement  on the basis that it does not meet your needs. You will have to show that you qualify for another tier.

 

If your tier assignment does not make a significant difference in the services you are receiving, challenging the tier assignments may not be indicated and/or successful.

 

DECISION TO CHALLENGE TIER ASSIGNMENTS

Some things you should consider in making the decision whether to challenge the tier assignment are:

You may challenge

the tier placement  on the basis that it does not meet your needs. You will have to show that you qualify for another tier.

 

 

 

 

If your tier assignment does not make a significant difference in the services you are receiving, challenging the tier assignments may not be indicated and/or successful.

 

When and if you receive a Notice of Tier Assignment, you have the right:  

 

 

Some things you should consider in making the decision whether to challenge the tier assignment are:

You may challenge the tier placement  on the basis that it does not meet your needs. You will have to show that you qualify for another tier.

If your tier assignment does not make a significant difference in the services you are receiving, challenging the tier assignments may not be indicated and/or successful.

 

If you are the parent of a minor child living at home, your services should not change and should continue under state plan Medicaid. Personal Care Assistance services for minors will continue as a Medicaid state plan service. You may want to proceed to challenge the tier assignment only if there are waiver specific services that exceed the tier limitations. APD has indicated that it will review the petitions to determine initially whether it had made a mistake on the assignment prior to forwarding the petition to the Division of Administrative Hearings.

 

WHERE TO GET HELP

The Advocacy Center for Persons with Disabilities, Inc., http://www.advocacycenter.org has instructions available to assist you regarding filing a petition and the hearing process. It is in the form of a manual and is entitled “When They Don’t Play Fair, Level the Playing Field.”

Three Rivers Legal Services, http://www.trls.org.

Southern Legal Counsel, 352-271-8890

Florida Legal Services, http://www.floridalegal.org/

Jacksonville Area Legal Aid, 904-356-8371

Advocacy Center, CARES team, 850-488-9071, 1-800-342-0823

 

 

 

 

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?

My son, a retired major in the Air Force, often talks about not falling into a victim mentality.  There is no doubt in my mind that this is an essential element when you want to be successful and you have a disability.  One thing that deeply impressed me about Frank Howard when I first met him was that even though he had an extremely awkward gait, there was nothing pitiful about this young man.  I was so impressed that I later married him. 

After 46 years of marriage, I find he maintains a determined spirit that he won’t pity himself because of his disability.  While his health is failing by inches each day, he resists the temptation to feel sorry for himself.

The victim mentality manifests itself in many different ways.  First, there is self-pity.  Of course, everyone falls into the pit of pity in occasion but this is different.  It is a permanent odor that screams, “Look at me!  I’m different.  My life is worse than everyone else!”

Second, there is a sense of entitlement.  Perhaps it manifests itself in expecting favors without feeling that you need to return them.  Helen was a helper at one of the churches where I held a position.  She was a volunteer and I gladly picked her up and took her home on the days she worked.  We went out to lunch and I usually paid for her meal. 

Helen had never driven a car.  One day as I drove her home, we got into a conversation about how hard it was for her to get rides now that her husband was dead.  “You could ride the bus,” I offered to her. 

“Are you kidding me?  They charge 50 cents every time you ride.  It would be a dollar for me to get anywhere I wanted to go.”

“Well,” I said innocently, “you have to pay your friends more than that when they pick you up to take you places.”

She lifted her head and raised her hand in a rather emphatic gesture, “I don’t pay anyone anything to give me a ride,” she said.  “It’s bad enough that I don’t have a car.  I would never pay for a ride.  I need my money.”

“But your friends are elderly and retired the same as you,” I ignorantly pursued the subject jumping carelessly into the lion’s den.

With great fierceness, she raised her voice and spoke slowly as though I had suddenly become hard of understanding, “They are rich enough to afford a car.  They can carry me when I need a ride.” 

For the rest of the ride, this small elderly lady worked over my clock with a hard bristled brush.  I don’t remember her arguments.  I do remember the blistering hurt I felt when she slammed the door as she exited the car.

Her argument in short was “I’m a victim.  I’m entitled.”  And she didn’t have a disability.  She had simply never learned to drive an automobile.

Third, is a growing resentment when people don’t perform to my expectations. One day I called the Space Coast Area Transit main office for some information.  Because we work closely with the transportation system, I’ve come to know the people in the office pretty well.  Today, one of the leads was frustrated.  “What’s wrong?” I asked.

“I’m just not able to cope today with the anger of some of the people who call making demands that public transportation can’t provide,” she said on the verge of tears.  While SCAT isn’t perfect, it is public transportation and they can’t fulfill all the desires of people needing a ride. 

More than rides, there may be a dissatisfaction with group homes, job placements, companions, paid state workers and professional staff.  Of course, there is plenty to become disgruntled about.  Yet, festering resentment only feeds the victim mentality.

Self-pity, a sense of entitlement and festering resentment will turn any person into a hateful shrew.  Of course, persons with disabilities aren’t the only people who can become entrapped in this vicious cycle of unhappiness.  Parents, caregivers, professionals, and, yes, ministers must guard our hearts against the unrelenting horror of a victim mentality. 

Guarding our hearts from the poisonous trickles of seeping self-pity may the main and most effective way to keep ahead of the pain victimhood generates.  Prayer, meditation on God’s word and fellowship with people who will be honest seem to be the ways that I’ve seen others escape.

What about you?  What are some of the ways you’ve seen this cycle hurt people you know?  Do you find that people with disabilities are more prone to this cycle? Or have you found them less like to fall prey to the victim mentality?

 Let My People Go

Third Week in August 2008

Call to Worship: I have seen the misery of My people in Egypt.  Exodus 3:7

The Lord is near all who call out to Him.  Psalm 145:18

Over the past few days, I’ve been caught up in the controversy regarding the movie, Tropic Thunder.  I‘m told that there are many offensive references to a important group of people.  The mentally challenged community is spoken of in offensive ways. It reminds me the struggles of the blacks in the South in the 1950’s.  It also reminds me of another group of people who were living under great oppression.  Moses was ready to talk to Pharaoh about having God’s people leave Egypt.  Things are about to get bad.  Have a member read, Psalm 145:18.

 

     I.     Egypt has had a nation of slaves for more than 400 years.  They like having slaves.  They like having Israel in their country.  However, that is about to change.

            A. Moses went to Pharaoh and told him that God wanted to people to leave the country for a few days to worship him.  Pharaoh refused.

            B. He made life much harder for the Israelites.  There would be no straw for bricks.  The people didn’t understand why their life was getting so much worse when Moses promised God was going to deliver them from Egypt.

 

II. I love children and teenagers.  I even loved my children and my teenagers.  But I know that the teen years are transition times.  Teens are unhappy and they make everyone unhappy.  But by the time, it is time for them to leave, everyone is ready for that to happen.

 

A.   This was kind of like it was in Egypt.  Things were getting worse for the Israelites.

B.    And things were about to much, much worse for the Egyptians.

C.   By the time they were ready to leave, everyone would be happy they were going.

 

    III. What about you?  Have you gone through a hard times?  Have you been unhappy?

            A. Maybe God is getting ready to make a change in your life.

            B. It could be time to pray for God’s wisdom for your life.

            C. There are times that we are like teenagers and everything makes us unhappy.

            D. Usually it not anyone else’s fault but we need to talk to God and find out what he wants us to do now.

Conclusion:  Moses and Pharaoh were about to get into a war of words and deeds–and God was going to win.  Remember, God always wins because he is God.  Life will be better if you just yield to him and obey.

 

 

 

 

 

 

 

 

 

During lunch with four pastors, a volunteer and a teenager who all work with people who are mentally challenged, the question was asked, “Should we go and see the movie Tropic Thunder?”  In case, you don’t know, I have been told–because I haven’t seen the film–that this a movie that contains some demeaning and even profane references to persons who are developmentally delayed.  It takes the degrading term “retard” to a new low.

 After a brief discussion of the movie and the pros and cons about viewing the movie, one of the teenagers who was sitting at the table asked, “Why would you even want to go and see that?

Perhaps the greatest problem with this kind of thing is that you want to be current and relevant.  In fact, won’t your opinions be dismissed if you don’t spend the time and actually see film?  Doesn’t being able to speak with authority mean that you must know what you are talking about and doesn’t that also mean that you must see the movie?

Balancing on the other foot, paying to see the movie only promotes the profits, encouraging other movie makers to copy-cat the experience.  “Sure it was a controversial movie but look how much money they made” could become the rationale for more of the same.

I happen to agree with the teenager at the table.  However, there would be great satisfaction in going to the movie, then walking out and asking for my money back.  Yet, if this is my plan and purpose, isn’t that a bit deceitful?   

As it often does in a free flow of ideas, the conversation morphed into one pastor telling about a private Christian school in Florida that had a contest at lunch time called “Retard of the Day.”  This contest was to humiliate the misbehaving students and help control them during this rowdy time.  I think, as a group, we left the lunch table with the disturbing realization that there seems to be no good way to handle this issue.  We were also smacked in the face with the understanding that abuse is allowed–even in Christian circles–in regard to this population and the mental health population that would not be allowed with any other sub-cultures. 

However, I was so grateful that these important people in our culture aren’t being warehoused and ignored.  I was raised in the South.  I remember the days when the mantra of the white population was “they don’t care and they don’t know any better.”  We found out in technicolor reality that we were acutely wrong and things began to change.  The South of today is not perfect by any means in regard to race relations; but so much better than the South of the ’50’s.  Yet, blacks and whites will tell you that it has taken years of pain and suffering on all sides to reach where we are. 

I didn’t march in any demonstrations to make things better.  But I did reach out and touch my brothers and sisters of color who lived in the South and love them.  I did voice my opinion in mixed company.  I did monitor the use of offensive words to insure they weren’t used by me or my children.  

Perhaps the movie, Tropic Thunder has given the mentally challenged community a resounding slap that will back fire into society as a whole.  Perhaps professionals and pastor will stop ignoring the offenses and begin to speak out and reach out in love and grace.  We can only pray that this will happen.

How do you plan on handling this offensive piece of Hollywood cinema?

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