A few days before Christmas, my husband and I had an appointment with the intake nurse from Hospice.  We’d been told at least 75 to 100 times that Hospice would be able to help with his day-to-day care and that he would qualify.  Now, understand this information had come from Hospice nurses, counselors and chaplains who knew about our situation.  In addition, we had a referral from his doctor.

After a series of questions, the nurse said, “He doesn’t qualify.”  To verify, she called her administrator.  They reviewed our answers and the information that had come from his doctor and together they agreed that he didn’t qualify.  In reality, WE don’t qualify because most of the help would benefit me.  I thought this would be a pretty traumatic decision.  However, after they left, I’m somehow relieved. 

This takes one more concern off the table for a time.  It’s true that I won’t get the help but I’m better able to maneuver him and his wheelchair than most men twice my size and half my age.  I know it’s because I’ve worked with him for about ten years now.  While I love any help I can get, it’s sometimes painful to watch people try to a job that has become second nature to me.

Often, the parents of our members at Special Gathering talk about their lives to me and to each other.  As permanent and full-time caregivers, these men and women are people that I greatly admire.  Special Gathering is a ministry within the mentally challenged community.  Our members are cognitively delayed.  Part of our ministry is to parents because we provide a respite time within a safe environment.  Our goal is evangelism and discipleship.

Most of the time parents are open about their short-comings.  One distressed mother said, “I’m exhausted by the seemingly endless demands.  Yet, when she is gone from me, I’m consumed with concerns and even guilt.” 

One parent-caregiver of a high-functioning  woman often tells about the time that she gave into the demands of her social worker and allowed her daughter to go spend the night with a caregiver.  The daughter fell and injured her hip.  She has been in a wheelchair ever since.  “What good did that one night do for me?” she laments.

One parent told me pointedly, “I need the help.  I don’t need the aggravation.”

For now, my husband and I will rock along on the same path we’ve been walking for years.  No help.  No aggravation.  Guess that make us even.

What are some of the things which benefit your parents?  What are some of the things which cause the greatest aggravation from supports which are provided by the state?

As a program director for a ministry called Special Gathering, I find myself in the interesting place that I’ve seen the parents and caregivers of our members in for several decades.  I am now a full-time caregiver for a person with a disability.  Yes, my husband has had a disability all our married life.  However, his disability was never a handicap for him or our family.

My husband, Frank, worked hard at not letting the disability that he inherited from his mother limit him.  And by and large, it has not.  He was an Aerospace Technologist for NASA until he retired in 2002.  (They almost had to force him out the door.  He worked his maximum time.)  He rarely missed work.  He had many inventions and innovations within the space industry.  He was known as one of the world’s leading experts in the field of cryogenics. 

He never thought of his having any additional drawbacks.  He was contantly endeavoring to insure that he had as few physical obstacles as possible.  His off-the-charts IQ didn’t hurt him either. 

Because of a small inheritance, we have been able to continually upgrade our home to accommodate his growing physical needs.  Thereby we have been able to minimize his increased weakness and maximize his abilities.  However, his vascular dementia has added an increasing concern for both of us.  He has become increasingly dependant on my physical presence.

I still work full-time with The Special Gathering which is a ministry within the mentally challenged community.  Our sole mission is to evangelize and disciple people who are intellectually delayed.  However, in my position as area director, I have a flexible schedule that allows me to do much of my work in my home office.  Computers, Internet access and cell phones are amazing wonders that make any office job as mobile as you want it to be.  Yet, I find myself needing time away.

In February I’ll be going on a cruise with the Special Gathering program director.  She is taking three or four of her members on a Disney cruise.  They will be sailing from Cape Canaveral which is 20 miles from my office.  Recently, people have said, “Why are you doing that?  You need to really get away.  Not go with some of your members.  That isn’t a rest for you.”

Actually, it is.  I will be rooming with our SC program director.  She will be in charge of her members–not me.  I’ll be able to enjoy them, without having the responsibility of their care.  What could be better?

You see, of all the people I’ve ever met, I think I enjoy teenagers (especially junior highs) and mentally challenged people the best.  They are playful, unassuming, grateful and easy to please.  Of course, they are also people and they can be prima donas and bullies.  They can pitch fits and work the system.  But their lack of sophistication and child-like desire to please limits their ability to hold a grudge or pout for years and years. 

All in all, the mentally challenged population is a group of amiable and pleasant adults who like to have fun, shop and eat.  What better group could you vacation with?

Do you find your members to be fun or a burden?  What do you enjoy about your members?  What do you not enjoy about your members?

Is there a gracious way to say, “We’ve had our difference but I’d like to be your friend”?  A member that we will call Luke has had at least 25 caregivers in the 20 years that I’ve pastored him through The Special Gathering.  We are a ministry within the mentally challenged community which means that we work with people who are developmentally disabled.  Our goal is to evangelize and disciple this population. 

I understand that Luke is an extremely wealthy man.  He is alone in the world, unless you count a few distant relatives he hasn’t seen since 2004, his banker, two lawyers and a legal guardian (who writes his checks and sees him about four times a year). 

A couple of years ago, Luke was asked to put on paper all the people who are important to him in his life.  We used the circle within a circle target pattern exercise where you put the people most important to you in the center circle.  Then other folks less important extend out to the larger circles into the outer boundaries.  Luke had only two people in all of his circles–me and a fellow choir member. 

While I was greatly honored, I cried when I saw his circle of friends.  Wealth within any population of people doesn’t insure friendship.  This is especially true within the mentally challenged community.   Since that time, I’ve felt a renewed concern regarding Luke’s well-being and safety.

About a year ago, one of the newer caregivers dropped Luke off at a church where the choir was singing.  Her usual pattern is to drop him off early.  However, this was a half-hour early and there was no one at the church.  When I came into the sanctuary, Luke was sitting alone in an empty cavern.  “How long have you been here?”  I asked.

“Since 9:00.”  It was 9:30.  I was beyond furious.  This is a legally incompetent man who was dropped off at a church where no one was even present.  He is extremely high functioning (not even MR), but what was this caregiver thinking? 

After the service, I spoke to the caregiver (a different person because there had been a shift change) and explained that he could not be dropped off a half-hour early at a totally empty church.  The next morning, I called the agency who holds his guardianship. They hire and fires the caregivers.  I explained what had happened.

The next time I called the home, the offending caregiver apologized to me and assured me that this would not happen again.  That was almost a year ago.  Since that time, this caregiver has proven to be a truly competent person regarding Luke’s well-being. 

He is now clean.  The offending odors are gone.  He has new clothes.  Some lingering health problems have been addressed.  She and her husband now live with Luke and double up regarding his care. 

She has been extremely cautious and cool to me since the time that I spoke to the current person who is taking Luke’s “case” at the guardianship agency.  Last night, after our Christmas play, I spoke to his caregiver and her husband and told them how impressed I’ve been with the level of care that he has received this past year.  Today, I’ll write a letter to his guardian saying the same thing. 

Guess I want to mend fences.  Above all, I’d like to keep this caregiver around for a couple more years.  She seems to really care for Luke and that means a great deal. 

I believe in complaining when there is a concern.  Additionally, I don’t think it was wrong to register my concerns.  However, when those calls are made and fences of loyalty are broken, repairs may need to be extended at a later date.   I may even take the caregiver out to lunch one day this week.  Soothing ruffled feathers seems to be in order. 

As a Christian and Luke’s pastor, I believe it’s imperative for me to take Paul’s advice, “As much as is possible live at peace with all men.”

What do you think?  Should there be a time for fence mending?  What is the Christ-like thing to do?

Loneliness

Of course, she won’t come or bring her two children because she ended the telephone conversation with “I’ll think about it.”  In polite language that means “No.”  And I don’t blame her.

I’d called this mother to invite her to come and bring her children to our Special Gathering that meets on Sunday morning at First United Methodist Church in Melbourne.  I liked her immediately.  The vibrancy and confidence of her personality was exposed in her voice.  She was polite and careful not to reveal the offenses she’s experienced over the years.  But I’ve worked with The Special Gathering of Indian River which is a ministry within the mentally challenged community for almost 20 years.  We do classic ministry, evangelism and discipleship. Too often I’ve heard the signs and her conversation screamed with desperate undertones of rejection. 

There are several reasons why she won’t entrust her precious treasures to The Special Gathering.  The most obvious reason is that they are her children and she isn’t convinced that I care enough about them to care enough about them.  Too many people have promised to care, only leave her and her treasures stranded in that all-too familiar corridor called Hope.  Unfortunately, in our world, Hope usually leads to an empty room labeled Loneliness.  She’s seen her children sitting quietly in Loneliness too often.  She chooses to not risk the hurt this time.

Second, they’ve been rejected by normal society once too often.  Rejection by her church was more than she could bear.  “Can you imagine how much it hurts to see everyone else included and my children left out more times than I can count.  Every single time.”  It was a retorical question.  She didn’t expect me to understand.  So there was no question mark and she didn’t wait for an answer.  But in our 20 minute conversation, she repeated her question three times.

Third, she doesn’t know me, Linda Howard, well enough to trust her must precious gems into my care.  My schedule doesn’t permit me to go to Saturday bowling anymore because I’m in Vero.  She mentioned it to me, “I don’t remember ever seeing you at Saturday bowling.”  If I really cared, wouldn’t I be at the things her children care about?  Wouldn’t I show up at least some time?  Sure, I’m busy doing a van route during that time and I’m at their workshop weekdays but she isn’t there during the week.  Where am I during the rest of the week?

Fourth, her children aren’t able to speak and she’s not confident that her children won’t be ignored, again.  “They have no behavior issues.  So they are usually shuttled into a corner and left to stare. That’s normal for them.”  She explained that she’s learned how to engage them but most people don’t even try.  While I endeavored to explain that our program is geared to minister to mentally challenged individuals, she ears and head heard but her heart was not listening.

There are probably several other reasons why she won’t come now.  But she will sometime in the future and the children will become more confident disciples of Christ.  God will work in her heart as I pray and reach out to her children.  She’ll begin to develop at trust level with The Special Gathering program because she really wants to be able to trust the Church, her church, again.

But for now, she won’t come.  And I don’t blame her.   

Special Gathering Weblog had stopped logging information about the Tier system because of several reasons.  First, the Advocacy Center has filed a lawsuit against the State thus effectively stopping the State from putting the Tiers into place.  Second, there seems to be a lot of information already available. 

 

However, several dozen people come everyday to view this blog for information regarding the tier system.  Also, WaiverProvider.com has reported that APD will enact the Tiers this summer in spite of the law suit.  And there will be an additional 7.21 percent reduction effective in July.

 

 My e-mail was buzzing yesterday regarding the Tiers.  I think there is a wealth of misunderstanding still being circulated among parents, families and providers.  Therefore, I want to share with you the things reinforced to me yesterday from two informed advocates.

 

 The most important thing is a reminder to all parents of children with disabilities.  It is the goal of APD to put individuals with intellectual disabilities who live at home with their parents in Tier 4.  This is the lowest Tier available. Your services will be capped at about $14,700 a year.  It is my understanding that those on Tier 4 will not be able to use all the services that those on Tier 1-3 will be able to use.  I think they will be limited to:

 

 Adult Day Training

Behavior Analysis Services

Consumable Items

Durable Environmental Equipment

Inhome Support

Emergency Response System

Respite

Support Coordination

Supportive Employment

Supportive Living

Transportation

 

 Therefore, they will not even be able to use things like a Companion.  Please understand this means that those who live in group homes can have a companion.  Those people who do not live in a group home cannot have a companion.  Go figure. 

 

The only services available at this time on FSL which will become Tier 4 are as follows (I have included the cap per service that FSL has on each service–no word yet on whether the caps will carry over to TIER 4 but APD is not denying that it is a possibility; these are pre-December 2007 rates, by the way):

 

Adult Day Training —————————————- $1,000.00

Behavior Analysis Services (including Behavior Assessment and Behavior Assistant) —————————————-$4,500.00

Consumable Medical Supplies ————————— $800.00

Environmental Accessibility Adaptations ———— $2,000.00

In-home Supports ——————————————- $5,000.00

Personal Emergency Response System ————— $300.00

Respite Care ————————————————- $1,000.00

Support Coordination ————————————– $1,780.68

Supported Employment ———————————— $2,500.00

Supported Living Coaching ——————————- $3,500.00

Transportation ———————————————— $1,000.00

 

As we think through the implication and do the math, it means that ADT will be available for people living at home one to two days a week if these caps are enforced.  To accommodate these changes in the Waiver, Bridges of Brevard has announced plans to provide ADT services on a more limited basis.  Three or four days a week for most people. 

 

Transportation through funding with APD will also be extremely limited.

 

These are not good indications for families who pick up the bulk of the work for their children.  Parents who have sacrificed in unbelievable ways to keep their children at home are again being told that what they’ve done is not enough.  They must do more.

 

 Yes, everything is still in flux.  It could change for the better. However, this is the most blatant attempt the State has made to rip services from this most vulnerable population.

 

It is inevitable that conflict will come when two people live, work, play or worship together.  An extremely quotable pastor from years past, Jack Green, once said, “If two people live together, there will be conflict, unless one of the two people is dead.” 

I’ve always assumed that if there is a conflict between two people at least one of those people is angry.  That does not mean, of course, that one of the two people is sinning.  The Bible clearly says, “Be angry and sin not.”  This makes it pretty clear that you can be angry and not sin.  

I am area director of Special Gathering of Indian River, which is a ministry within the mentally challenged community. Our mission is to do classic ministry, evangelizing and discipling the people we serve.  Like every other pastor who ministers to a particular group, we deliberately tackle issues that are relevant to our members.  We talk about the sheltered workshop and having a job on the outside.  We try to deal with the issue of having to live with your parents FOREVER.  Proper behavior with your girl/boyfriend is a scorching hot topic.  Yet, I’ve never squarely faced with our members the issue of siblings–until last week.

Our sermon was on Jacob and Esau.  We are all familiar with the bitter rivalry that these men faced, even in the womb.  Both mother and father were guilty of fostering these battles, which eventually led to resentments.  This week in our sermon I explained to our members that their brothers and sisters have given up a lot for them.  Because many of them were sick as children and they always have had special needs, their siblings lives were different from others.  I urged them to say thank you to their brothers or sisters for helping them and for being kind to them.

I was surprised because one especially sensitive young woman, Michal, spoke up and said, “I don’t have to, my sister loves me.”  While I don’t often welcome interruptions during our devotion time, I was happy for this one.  As she spoke several of our members vocally agreed with her.  Obviously, I’d not made my point clearly.

“No!”  I tried to clarify.  “I’m not saying that they resent you so you need to say thank you.  I’m saying they have given up a lot for you, and for that reason you need to say thank you. Recently, the Holy Spirit spoke to my heart and said, “You are so involved with what you don’t have that you don’t appreciate what you do have.”  

It is true that our members are discriminated against almost everywhere.  But in their homes, they often receive preferential treatment.  Siblings see it.  They may even be angry but it’s been my experience that few of them sin.  They embrace their disabled partner in family life and move on, helping where they can.  Siblings deserve a big thank you for their love, understanding, and caring.

Is there someone in your life that you need to thank?  Perhaps your husband or wife who does so many little things to please you?  What about one of your members who is careful to help you each time you meet?

I write down my dreams.  And, yes, I agree with Joseph who told Pharoah that God gives the interpretations to our dreams.  Several years ago I had a dream that completely confused me.  The essence of it was that my husband and I moved into a large new house in Denver, Colorado.  The house was beautiful, large and expensive.  We even owned a shopping center in our lower floor.  I loved the house but at the end of the dream, I burst into tears, saying, “I miss my old home.” 

The dream completely confused me.  The question loomed in my brain, How could I be so unhappy about such a great and beneficial move?  Last week I reread the dream.  This time the meaning was totally clear to me.  Ten years ago, my life took a radical and violent detour.  As a result, everything was turned upside down.  I felt I would lose my ministry and perhaps even my family.  Even though none of that happened, I grieved my loss for three years.  As the years have slipped away, however, the result of this radical change for me has been that I have a great deal more freedom and stability than I’d ever imagined I would have.   

The Special Gathering is a ministry within the mentally challenged community.  We do classic ministry, evangelizing and discipleship.  As a result, we are the pastors of many people who don’t even attend our weekly programs.  In a conversation with a family member last week, a father confided, “The birth of Marvin was the best and worst thing that ever happened to our family.”  Marvin is a man in his thirties.  Handsome and energetic, Marvin is also developmentally disabled.  Like all our families, his mental retardation has been a source of great grief for the family over the years.  However, as Marvin has developed and matured, he has become his parents greatest source of joy.  This is also true in almost all of our families.

The famous disability lawyer and my good friend, Dolores Norley died about two years ago. When she realized that she was terminally ill, Dolores put her son in a group home .  One afternoon as we sat on her screened porch, she laughingly told me, “I’m going to be really mad at God if I don’t die soon. ” It had been a difficult decision to not continue to live with her son in their lovely garden cottage.   “I’ve had two husbands and several roommates but my son is the best companion I’ve ever had.”  Her laughter stopped and tears formed as her voice cracked, “I cannot tell you how much I miss him.” 

This sentiment is echoed in the families who make up our small subculture again and again.  God’s economy and ways are not like our ways.  His economy is often too upside down for my tastes. But over the years, we learn that he is correct and often the greatest, most brutal experiences of grief become our greatest blessing.

How many times have your heard the same sentiment from other parents whose children are intellectually delayed?  Do you see that same sentiment expressed by the siblings of the family?  What makes the difference between sibling who resent their disabled brother or sister and who love them?  Or is that the subject of another blog?