Disabled and Alone


Have you thought about this?  What does my staff need to know in order to run a safe program?  What information do we need to harvest from our members to be able to access emergency information?

There are two schools regarding this issue.  First, if you don’t have any information, you may not be liable.  There is a club that runs in the middle of our state.  These are good folks wanting to do good things for the mentally challenged community.  They don’t have any information about the people they bring together for entertainment.

Second, gather as much information as you believe owill be enable you to run a safe program.  At Special Gathering, we worked with many nurses and social workers (support coordinators) to be able to determine what we needed.  These are the things we were told by many professionals that would be needed.

  1. Name of the members
  2. Address, City, State and Zip code
  3. e-mail address of closest relative or staff
  4. main phone number
  5. Date of birth
  6. Name of closest relative
  7. Address, city, state and zip of closest relative
  8. Home, work, cell and any other phone number
  9. Persons to notify in case of emergency (other than closest relative)
  10. Home, work, cell and other phone numbers of emergency person
  11. Name, phone number of support coordinator
  12. Information regarding the person competency status.  (This is a confusing area.  The best question to ask is:  Have you been adjudicated incompetent by a court of  law?
  13. Name and phone numbe rof guardian
  14. List of chronic medical conditions.  Also, a list of procedures necessary if the condition worsens while at Special Gatheirng
  15. Does the person have seizures
  16. List all allergies
  17. List all medications.

Additionally, because of HIPPA Law, we ask that a Consent to Release Confidential Information form be filled out.  This form includes:

  1. Individual’s name
  2. Date of Birth

Statement to support coordinator:  I do hereby authorize the Agency for Person with Disabilities or its representatives to release the information check below from my records, or those of my child, or the individual for whom I am legal guardian.

In the form have these items pre-checked:

For Healthy and Safety

  1. Medications
  2. Allergies
  3. Emergency contacts
  4. Seizure activity
  5. Emergency contact information
  6. Notification of adjudication of incompetency
  7. Notification of change of Support Coordinator (or social worker).

For Pastoral Care

  1. Notification of Hospitalization
  2. Notification of Death in the family
  3. Notification of other sadness

Include name and address of ministry staff who will be responsible for recording this information.  Signatures should include:

  1. Signature of individual
  2. Signature of parent/guardian
  3. Signature of witness (if signed iwth a mark)

The third form is a Support Coordinator Release letter  It should look like this:

Dear (The name of the person’s support coordinator should be put on a line and will need to be  explained on the form)

I am a member of The Special Gathering.  I would like The Special Gathering to be kept up to date with any health concerns that may be needed in an emergency, such as midicine I take and allergies I have.

I would also like The Special Gatheirng to be notified in case I need pastoral care.  If I am sich or hospitalized, if there is a death of a joved one or of other sadness.

The Special Gathering worked with two support coordinators in desinging this release form, but if you have one you would rather use, please bring it to me to sign.

I would also request that you reissue this release form every year at my support form.

Sincerely,

________________                                  _________________________________

Member signature                                        Parent of guardian sign

Date                                                                     Date

The fourth form is a simple statement signed by the member what states that they do not want to give any information to Special Gathering.

Except for a member’s salvation, there are few things that are more important than the safety of our members.  As our executive director, Richard Stimson said, “We cannot survive a breach of confidence within the community.”  God blesses those who are wise enough to prepare for the harsh weather

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Mickey was adopted by a loving Christian family 21 years ago.  He was diagnosed with no brain stem three months after his birth.  His three siblings who were teenagers and his parents refused to believe that there was no hope for him.  They worked passionately with the baby.  Miraculously Mickey responded.  He now walks with the aid of a walker, speaks in two-word couplets and generally attempts to lead every group in which he is involved.   Like many of our members who don’t speak, I’ve said of Mickey that if he could talk he would rule the world. 

As we were finishing up our refreshments in our Saturday program, I was standing at the front of the room preparing to teach.  Mickey was sitting in the back of the room.  I overheard Mickey conversing with a volunteer.  She was cleaning up his chips and juice.  He said, “Messy.” 

She responded, “You did make a mess today, didn’t you?” 

Knowing Mickey, I said to the volunteer, “Oh, he wasn’t saying that HE was messy.  Mickey was saying that YOU are messy.” 

Mickey smiled and loudly responded, “That’s right.”

Of course, we were thrilled with his interaction with us but that wasn’t the end of his discourses for the day.

From our membership, we vote on our deacons.  We’ve never had deacons in our Vero program, so I’ve spent several months inserting snippets of teaching and reading, reviewing and talking about the qualifications of deacons.  Last week, I spent the entire Bible study time.  I taught about the qualifications and responsibilities of a deacon.  I read the portion from I Timothy and asked our members to apply each requirement to their lives.  After writing their responses on the white board, I said, “Look at these qualifications.  Do you know anyone in Special Gathering  that you believe qualifies to become a deacon?”

Immediately, a confident, loud voice came from the back of the room, “Yeah, me.”   Mickey had voiced his desire to be a deacon. 

I explained to the rest of the class that the Bible says that a person who desires a position in the church body, desires a good thing.  Therefore, it is proper to believe that you may qualify to become a deacon if you are willing to accept the added responsibility. 

The mentally challenged community speaks often in one work or two-word couplets.  However, more often than not, it is important to hear the words spoken.  They may be needed correction or joyful words of assurance of God’s love.

God is always with us

Genesis 28:15 and 16

Central Theme:  We cannot go anywhere away from God.

 

Introduction–I have never seen my face.  I have never looked at me. 

                  A.  But I know that I have face.

                  B.   I even know what I look like.

                  C.  Bring out a mirror.  I have seen a reflection of my face in a mirror.

 

          I.      I cannot see God but I know God is with me. 

                  A.  Have a member read Genesis 28:15 and 16. 

                  A.  Tell the story of Jacob.

 

         II.      Jacob did not know that God was always with him.

                  B.   Jacob thought that when he left his father and mother, God        would not be there.

                  C.  We learned last week that God will always love us. 

                  D.  Now we learn that God is everywhere.

 

       III.      I can see my face in the mirror, so I know what I look like.

 

                  A.  How do I know God is always with me?

                        1.   The Bible tells me so.

                        2.   I have been surprised, like Jacob by God’s touching me.

                              A.  I was listening to music the other day; and God touched                                     my heart and I started to cry.

                              B.   I felt his love for me.

                        3.   I have been helped when I was in need.

                              A.  There was a time that my car stopped in a rain storm                             when it should not have stopped.

 

Conclusion–When I look into a mirror, I see what my face looks like.  I know I have a face, even if I have never seen my face.  I see God in my life and I know that he will never leave me or forsake me.

Aging parents whose children are developmentally delayed or mentally challenged often asked each other, “How can we insure that our children will be taken care of when we die?”  Richard Stimson, executive director and pastor of Special Gathering, Inc., a ministry within in disability community, began to look for answers to the question his member’s parents were asking, and he was stumped.   Knowing Stimson as an active advocate, parents quizzed him almost weekly and he desired to find an answer.  Yet, there seemed to be no organization that could serve as an answer for the aging parents and their children.

The situation was becoming dire.  In the 1950’s, these men and women bucked the conventional logic and societal norm.  They rejected the advice of their doctors and the professional community.  Without an organized push, individually, yet in unison, families declared, “We are not going to institutionalize our children who are intellectually disabled.  We are taking them home.  We will love them and care for them ourselves.  They are our children; they don’t belong to the State.”

Thus began a silent revolt that eventually fostered radical changes within the disability world.  People often credit President John F. Kennedy for bringing these visionary changes in this cloistered sub-culture.  However, parents had begun the revolt more than a decade earlier.  As their children matured, the parents fought brutal battles winning civil rights of their offsprings.  In the end, they won most of their battles.  They saw victories as their  children were allowed into the educational system.  They championed the group home movement.  They formed and supported vocational rehabilitation day programs.

Now, these advocates have aged.  They are too old to effectively battle the systems that engulf their children.  They are preparing for the time when they can no longer take care of their loved ones.  “Will you help us?”  was the plaintive plea that Stimson heard again and again. 

 Additionally, he had observed well-meaning social workers who did not understand the heart of these parents.  Sometimes, the professional community viewed these battle-weary warriors as overprotective, intrusive and unrealistic.  Ill informed and without a sense of history, the younger professionals occasionally did not realize that these were the men and women who had fought state and federal officials, insuring that funding would be available to pay their salaries.   Feeling their actions were in the best interest of people who are mentally challenged and in good conscience, these social workers could lead the adults who are developmentally disabled toward paths that spelled disaster in the hearts of their more traditional parents.   

Fathers and mothers also saw their friends’ children moved across the state or away from friends and jobs.  Frequently, the decisions that were made regarding the safety and well-being of disabled adults didn’t make sense to the men and women who had advocated for their children for 30 or 40 years.  Sensing the parents’ desolation, Stimson started down the road of innovative research that often provides answers in the non-profit world.  He started looking for the answer to a need.

What parents described to Stimson was an organization that would operate like a quizi-parent.  He felt there needed to be a salaried professional, not paid by the State, who would look after the interests of a disabled adult after the parents’ death.  His search led him to one organization that seemed to meet these criteria.  The non-profit he found was Disabled and Alone/Life Services, a non-profit based out of New York. 

His investigation showed that Disabled and Alone seemed to be moving in step with what parents were requesting.  Then Stimson went beyond (1 ) identifying a need, (2) searching for an answer and (3) doing thorough research.  He linked his organization with Disabled and Alone.  Special Gathering, Inc. and Disabled and Alone became covenant partners.

The final step came almost by accident.  When Disabled and Alone was given a grant to expand into Florida, they called Stimson and asked him to be their representative in the Southeast region of the US.  Stimson has been able to expand the services of Disabled and Alone.  He is now able to offer parents in Florida, Georgia and South Carolina, the opportunity to help their children once they are alone.

Many non-profits are formed following the path that Stimson navigated.  This path, however, will bring success to any person or business.  First, he recognized a need.  Second, he searched for answers.  Then after doing thorough investigation, Stimson personally invested himself.  He made a commitment to be a part of  the answer.  Stimson brought Disabled and Alone/Life Services into Brevard County.

This is a short fiction piece I wrote several months ago.  While the events are fictionalized, the facts and information are all too true. 

Barbara smiled as Marge slowly lifted herself from the booth in the Ocean View Bowling Lanes. With her empty cup in hand, Marge headed toward the pot of free coffee. “I can get that,” Susanna said while trying to take Marge’s cup. “I’ll go surfing in that ocean out there before I let anyone begin to wait on me. Thank you very much,” Marge growled in her gritty, stern, lovable way. Barbara’s smile faded as she remembered the cancer that was mercilessly consuming Marge’s liver and spleen. Barbara picked at a broken finger nail as her mind flew back 45 years.

Barbara met Marge and Susanna in the hospital two day after Barbara’s only child, Bradley, was born. Their friendship had begun that cold, dark night as the older women silently sat holding Barb’s hand, sharing her grief. Marge and Susanna were about 15 years older than Barbara and they had shepherd her through those first tough years.

The three mothers belong to an exclusive, virtually unknown club of mothers of mentally challenged (developmentally delayed) children. This mutual bond cemented them together as they lived the next 45 years grieving each unfulfilled dream as their children grew older but remained almost the same. Now Marge at the age of 84 was dying.

Susanna was 86 and healthier than any of her four children, except for Carl. He shared his mother vigor, health and zest for life. Even though he was 50 years old. Carl’s developmental disabilities meant that his intellectual abilities would force him to always have the emotional temperament of a 12 year old. To compensate Carl had developed street smarts and an amazing charm and sense of humor.

Before Marge could return from her journey across the bowling alley, Bradley came running up to the booth and spoke to Barbara. “Mom, Mom, did you see that? Did you see that?” he asked joyfully.

“Yep, I saw that,” Barbara said, as she did every Saturday, following Brad‘s first game.

“My score was 135. I got three strikes,” Bradley informed her as he had done each Saturday for the past 25 years with the exact same words and expression. His red hair and freckles would have made him look younger than 40, even without the child-like enthusiasm that punctuated his every move.

“I know. I saw. Didn’t you hear me cheering?” Barbara repeated her well rehearsed part.

“I am so good. I am the best bowling in the whole county.” Bradley recapped his lines with emphasis in all the appropriate places.

“You brag too much,” Marge corrected, smiling at her offspring as he jumped up and down, clapping his hands with delight.

“You say that every Saturday,” Bradley tenderly scowled his mother.

“You brag too much every Saturday,” Marge said.

“I can’t talk all day,” Bradley concluded the Saturday-end-of-game drama, walking back to the lane. “I have another game.”

Susan came to the booth. She was crying. “Where’s my mom?” Susan was 55 with a stocky frame and straight blond hair. She was beginning the first signs of Alzheimer’s Disease and her tears flowed more frequently these days.

“I’m here. Just went to get a cup of coffee. You’re not an abandoned orphan, yet.” Crusty, Marge slowly maneuvered her way back to the booth, spilling coffee with almost every step. Marge wiped Susan’s eyes with a napkin and listened for a few minutes to her story. Then Marge interrupted Susan. “Get back out there, Girl. They are going to start the next game without you.”

Surprised, Susan instantly stopped crying, put her hands on her hips and marched back to the alley. “Don’t you dare start without me!” she commanded her team mates.

Marge turned her attention to Barbara, “Okay. Susan will need a home soon. Don’t you think I know that? Next you will tell me that De Nile is more that a river in Egypt.”

Barbara placed her hand on Marge’s clinched fists. The memory of the first night the three women met in the hospital flooded her emotions. That night it was Marge who first reached out to her. Now Barbara only wanted to replicate the love Marge had shown to her. “Marge, you can’t continue to live in denial. What are you going to do? Where will Susan live?”

Tears welled up in Marge’s eyes and spilt down her cheeks. “I don’t know. I can’t think about it now. The chemo has made me so sick and weak I can’t think. I’ll have to deal with it when I get better.”

Susanna reached her hand over to join Marge and Barbara’s grip. “I am just so grateful to have four other children,” Susanna said. “At least, I don’t have any worry about what will happen to Carl when I’m gone. My oldest, Maria, has already built an extra room for Carl.”

“Oh, yeah,” Marge said sarcastically, removing her hands from the group to dab the tears in her eyes, “and we all know how well those two get along. I give that set up one week before Maria…”

Susanna interrupted, “Maria has promised to be nice and not badger Carl.”

“And when is that going to begin?” Marge asked. “Remember last week at Carl’s birthday party? Why Maria was all over him. That is never going to work and you know it.” Exhausted from the outburst, Marge sank back into the booth and tried unsuccessfully to lift her coffee cup.

The conversation ended tensely. The three friends sat silently waiting for the second bowling game to end. But Susanna and Marge had been through too many concerns during the past decades to let anything destroy the love they shared. Susanna had walked Marge to Barb’s car. Marge leaned heavily on Susanna as they shared a whispered secret. When the car drove across the parking lot , Susanna stood in the sun waving to her friends.

Susan had called Susanna and then Barbara the next morning. “Mommy won’t wake up,” she reported calmly through the phone. An emergency placement was found for Susan that afternoon. There were no openings in a group home in the state . There was a semi-supervised, adult-living facility but it was 150 miles from The Ocean View Bowling Lanes. Susan would be able to have a room in the old motel and three meals would be provided but that was all. No laundry, no helps. No one was able to provide transportation for Susan to attend the funeral. The morning of Marge’s funeral, Barbara and Susanna drove to Clearwater to get Susan. After the service they returned to Clearwater.

Susan’s room contained a bed and a night stand. Someone had come into her room the day before and stolen her TV and her sheets and towels. When they arrived at the apartment, two men lurked in the corners of the hallway, glaring and grinning. Barbara found out that they lived across the hall from Susan. Barbara’s stomach sank as she saw them. “I’m gonna get you,” one of the men said as Barbara and Susan brushed past him.

Susanna and Barb vowed to each other on the way home that they would not let Susan stay in that horrible facility. However, once home reality hit. The new Federal law protecting privacy called HIPPA made any inquiry impossible. Susan had no phone. She was in another district so they did not know her new social worker. Finally, in desperation Barb made the trip back to Clearwater. As she drove into the unpaved parking lot of the old motel, a young attendant with a Jamaican accent stood at the door of the office. “You looking for someone?” the woman inquired leaning into the car window.

“Susan Monica. I’ve tried for weeks to get in touch with her.”

“Won’t find her here. This was a temporary placement. She’s been gone for a while now.”

“Where is she? How can I get in touch with her.”

“Guess you can’t–what with the HIPPA law and all. All I know is that woman wasn’t prepared for the place they sent her,” the Jamaican shook her head in despair.

“Worse than this?” Barb asked in unbelief.

“Lot worse things than dirty sheets. While she was here, I could look after her and see that nobody did nothing to her, if you know what I mean. Where they sent her, no one cares.”

The next morning, Barb made her way to the bowling alley, earlier than usual. Barb hoped she could report to Susanna what she had learned in Clearwater without interruption. But Susanna didn’t come. With her cell phone, Barb called Susanna’s home and only got the answering machine. Then Barb checked her own answering machine. There was a message from Susanna. It was wracked with emotion. “Barb, Carl and I are on the way to Jacksonville. My son, Bob is taking us. My daughter, Maria, and her husband have been killed in an automobile accident. We have to identify the…” Suddenly, Susanna’s voice broke with emotion. “I’ll call you when I can,” she said. The message ended.

It was almost two months before Susanna and Carl were back at The Ocean View Bowling Lanes. Family meetings, the will, probate, selling the house and furniture all tied up Susanna’s time and waning energy. Barb had called almost every day but often Susanna was in a meeting, too busy or too exhausted to talk. As Susanna walked toward Barb at the bowling alley, she looked weak and small.

She got a cup of coffee and slipped into their booth. “I’m looking into a special needs trust for Carl. I have to do something,” Susanna sighed as she nervously twisted a napkin. “The two boys have both told me that their wives won’t allow Carl to come and live with them. My youngest daughter can’t take care of herself, forget taking care of Carl. I’m at my wits end.

“I understand about the boys. They live out of state. They say the adjustment of moving Carl from his work, friends and home will be too hard for him. I understand but…what am I to do?

“I’m starting to believe that even a special needs trust is not the complete answer. Who will be the executor of the trust? You, Barb? You’re older than Carl. A bank? Oh, Barb, there are no good answers for us.”

There was a long silence as the two mothers stared at their adult, child-like children congratulating themselves on their bowling prowess. They hardly noticed Rick Staman as he walked into the bowling alley. Rick was carrying his twin brother’s bowling case. The brothers were bantering back and forth until a chorus of “Hi, Rick,” ascended from the occupants of the busy lanes.

Carl and Bradley rushed over to their mother’s booth to announce Rick’s arrival. Rick Staman was the founder of a ministry within the mentally challenged community and a celebrity pastor among all the members of this small cloistered subculture.

After greeting all the bowlers, Rick made his way to the booth occupied by Susanna and Barb. With a comfortable ease, Rick slid into the seat beside Susanna. Over the past months, since Marge’s death, Rick had become an unlikely partner to their trio. Neither Susanna nor Barb were religious and they not had wanted their children to become involved in the ministry Rick founded. But they had lost the battle many years ago. Now they were glad.

Rick was in his early forties, tall and thin with black hair and a quick sarcastic wit. He was not religious but his commitment to Jesus as his Savior and the mentally challenged community was undeniable. Rick had become a research assistant for the two mothers. He had produced a file of lawyers for Susanna to consult for the special needs trust. He helped Susanna with a list of questions she needed to ask. Over the years, he had learned the state systems better than most professionals. Now the mothers were reaping the benefits.

Unknown to them, Rick had taken on the job of looking for an answer to their concerns regarding what would happen to their children, after their death. “What you need is a quazi family member. Someone who can become Mama, after you are gone,” Rick told Barb one Saturday.

“No one should become lost in an uncaring system, like Susan has,” Barb agreed.

Rick grinned at his two comrades who were older than his own mother. “Think I have an answer for you.”

“M and S?” Susanna asked, dejectedly. Parents sometimes felt so bleak about the future prospects for their disabled children that they whispered that murder and suicide could be the only solution. In fact, it was such a common reference that the abbreviation, M and S, were now most commonly used.

Rick smiled and reached for both of Susanna’s hand. “Hard week, huh?” Tears welled up in all of their eyes. Rick pulled a file and a magazine from his case. “Read this. Maybe, just maybe, there is a better answer.”

Rick had found an organization called Disabled and Alone located in New York City. Using the money in a special needs trust, Disabled and Alone pays a personal advocate to campaign for the needs and concerns of the disabled person, after the parents are gone. Avoiding a HIPPA debacle, the personal advocate would assure that our most vulnerable people in society aren’t lost in a bureaucratic system.

When Susanna didn’t seem to show much interest, Marge took the file from Rick. Susan had been a shocking reality of what could happen to her son. Marge was a realist and if help was out there, she wanted it.

Monday morning bright and early, she called Rick’s office. “If this organization is half as good as they looks on paper, I want in. I scolded Marge for years to plan ahead. She refused. Now Susan may be lost to us forever. I think the best bowler in the county deserves the life services of Disabled and Alone.”

Susanna and Carl are still reeling from the uncertainties of an unknown future and Marge understands. But she and Bradley are busy helping Bradley’s new personal advocate learn all about Brad’s interests and concerns. Marge only hopes that she can help guide Susanne into the program that could some day keep Carl out of the deep, cavernous holes of the bureaucratic system.