advocacy


Carla is not adjusting well to this time.  It is an end of an era for her.  Carla  is a high functioning person with intellectual disabilities.   Both parents have died.  She became too ill to live in her own apartment any longer.  For health and safety reasons, Carla has been moved into a group home where she can receive medical attention and help with personal care.

Joseph is experiencing the opposite.  It is also an end of an era for him.  His mother’s health has forced his family to make a hard decision.  He, too, has been moved into a group home.  While living at home, Joseph was never allowed to dress, shave or clean himself.  He was told where to go and what to do.  At the group home, he is required to clean, dress and shave himself.  He must take part in the chores and activities of the household.  He is required to do his own laundry and clean his own room.

Carla’s personality is softly pleasant.  Her manners are tender and appealing.  Joseph’s manner is gruff and abrasive.  He never walks.  He struts, giving the impression that he thinks more highly of himself than he ought.

unhappy catWhile Carla finds group home living restrictive and oppressive, Joseph has never had more freedom.  Carla has fewer chores and responsibilities now that she no longer lives in her own apartment. Someone cooks her meals, helps her with her household chores when necessary.   Without even informing her, the staff completes the paperwork required by the government which she often hid rather than traverse through the unintelligible maze of questions.  Carla resents the assistance she receives.

The demands on Joseph have multiplied but his finds increasing freedom in this new arrangement even though it is wrapped tightly with chores and requirements.  Of course, Joseph has never been one to complain.  He takes life as it come; and he trusts the Lord to work things out for his benefit.  Joseph often prays out loud, seriously or happily asking God to help him.

Carla admits that she almost never prays.  The requirements of “religion” are much too difficult and confining.  Carla cannot grasp the concept of God being a friend–her friend.

Joseph’s cognitive level is far below Carla’s but his faith quotient soars far above most other people.  He prays and expects an answer “because God loves me.”  He believes that “all things work” for his good because “God said it in the Bible.  Therefore, it’s true.”

In short, Carla is miserable and has been for years.  Joseph is joyous. Each day is a welcomed adventure.

sitting on a porchEach of us come to times in our lives when things radically change.  We graduate from college.  We get married.  Our first baby is born.  The first child enters kindergarten.  Then poof.   In a few short days, she is entering college.  The children leave home.  The children come back home.  A spouse dies.

Our IQ does not determine the position of our misery barometer.  Through prayer and fellowship with our Heavenly Father and Savior, Redeemer, Friend Jesus our barometers are adjusting.  They determine the joy and love into which we motivate through life.  I am praying that my life will follow the example set by Joseph.  Even though, he is a young man with a lousy personality and low IQ.  Joseph has tapped into the life-giving force of the Lord Jesus.  His example gives my hope and joy.

The song, “Riders on the Storm,” recorded in 1971 by the Doors invaded my mind this morning.  Perhaps I’m the only person in the US who can’t remember ever hearing this song.

My curiosity peaked by the title, I had to look up the lyrics.  Like many songs, some of the lyrics didn’t make sense to me.  However, the chorus is stunningly applicable to what happened a year ago.

Riders on the storm
Riders on the storm
Into this house we’re born
Into this world we’re thrown
Like a dog without a bone
An actor out alone
Riders on the storm

There is such amazing hope and despair coupled in these lyrics that my imagination was captured.  The songwriter says, we are riders on the storm.  Not tossed or turned in the storm but caught up riding above the storms of life.  However, once the hope is given, there is great despair because we are born to be thrown alone and lost.

One year ago today, my husband fell and broke his hip and leg.  He came home from an extended stay in the hospital and rehab centers on February 14, 2011 and died May 10.  I was only 10 feet from him when he fell; but we were in different rooms.  I bust through the door to find him sitting on the shower floor writhing in pain.  I knew he had broken his hip.  My first thoughts were our lives just radically changed.  Nevertheless, I had no idea how much change had stolen through our doorway.

From that moment, together he and I became riders on the storm, embracing and repelling the future with all our strength.  We laughed and cried in the same breath.  As his dementia accelerated, each moment became a bitter/sweet memory that I knew he would forget as soon as the hour passed.  I felt bitterly alone; yet surprisingly embraced second by second by Frank, our family and friends.  God’s wisdom was clearly working in our lives while the mystery of tomorrow became more and more clouded.

Often, God uses the secular to teach us His truths.  Today, I’m grateful to the Doors for their prophetic recording.  I ask God to bless them abundantly by leading them to know him through His Son, Jesus their Savior and Lord.

What about you?  Has there be one song–perhaps even a secular song–that God has used to help you through difficult circumstances?  Would you ever be able to use this teaching with your members who are mentally challenged?  How would you share this teaching?

 

Family Cafe logo

Dear Friends,

It’s official, the 2014 Florida Legislative Session has begun! Our elected representatives will be in session until May 2nd, working on a state budget, and tackling issues like Medicaid expansion, changes to the education system and efforts to reduce waitlists for state services.

While all sessions are political, the practice of the politics of the 2014 Session will be intensified, as the Governor, the entire Cabinet, all 120 members of the House, and half of the Senate (20 members) are up for election in November. So, this is the perfect time for advocates in the community to get involved. Let’s talk . . . let’s get informed and let’s get engaged!

 


 

Let’s talk . . . The Family Café is built around the idea that better informed families make better decisions for themselves and their loved ones.

Let’s talk . . . During the 2014 Regular Legislative Session, which beganTuesday, March 4, 2014 and lasts for 60 days, The Family Cafe is providing an opportunity to meet weekly via conference call to discuss the outcomes of Session. Please call in!

Let’s talk . . . During the conference call we will host various speakers, including community leaders, legislative leadership and local activists to share ideas/comments regarding the agencies and programs funded by the state.

Let’s talk . . . This is your call!  We will offer this conference call option every Friday for starting Friday, March 14th  at 4:00 p.m. The call is open to everyone! 

Let’s talk . . . Our  vision of meaningful family engagement in the legislative process can only be successful with the your participation!  Simply call the number below on Friday afternoon at 4:00 p.m. (EST). Sharing our various, unique perspectives is how we effect change, and how we learn from each other. At such a crucial time, we need to concentrate our strength, power and wisdom in order to insure an improved quality of life for all Floridians. Your input, suggestions and sharing of resources will ultimately make this community as powerful and productive as it should be.

But we can’t do it without you!

Let’s Talk!

Friday, March 14th

4:00 p.m. EST

Dial-in Number:  1-888-670-3525 

 Conference Code 2424632211 followed by the # Key.

Family Cafe logo

Dear Friend,

The Family Café is excited to let you know that NFL legend and disability advocate Dan Marino will be in attendance at The 16thAnnual Family Caféthis June!

Dan MarinoOf course, Dan Marino is best known for the seventeen seasons he spent as quarterback of the Miami Dolphins, which led to him being inducted into the Pro Football Hall of Fame in 2005. But did you know that he is also the parent of a child with autism, and an active disability advocate? He and his wife founded The Dan Marino Foundation in 1992 to help children with autism and other disabilities. Since then, the foundation has distributed over $22 million to research, services, and treatment programs. His foundation also established The Dan Marino Center at Miami Children’s Hospital in 1995, and recently launched the Marino Campus in Fort Lauderdale to provide education and training to help young people with disabilities acquire job skills.

Marino Children's centerThe Family Café is pleased to let you know that Dan Marino will be on hand to share his advocacy message, and perhaps some NFL memories, at The Annual Summit on Disabilities on the evening of Friday, June 6th. Governor Rick Scott has also committed to attend, as has long-time Family Café supporter and Education Appropriations Subcommittee Chair Bill Galvano. This year’s Summit is sure to be a memorable occasion, and we definitely want to see you there!

If you haven’t already registered for The 16th Annual Family Café, why not take a minute to do it today? In addition to The Annual Summit on Disabilities with Dan Marino, we have a full slate of informative breakout sessions, a full Exhibit Hall and plenty of family-friendly activities in store. It should be an amazing event!

The 16th Annual Family Café is set for June 6-8 at the Hilton Orlando, and there is no cost for families to attend. We even have limited financial assistance available to cover the cost of on-site accommodations. To register, visit our website. We will look forward to seeing you there!

Thanks,

The Family Cafe

The Family Cafe 888-309-CAFE www.FamilyCafe.net

519 North Gadsden Street
Tallahassee, FL 32301
United States

Justina-pelletier_2Justina-pelletier_2Perhaps you have heard or read about a young woman named Justina Pelletier.  She is still a teenager. She is not intellectually disabled though the young woman was diagnosed in 2011 with mitochondrial disease.  This is a disease in which the mitochondria (the energy-producing organelle in cells) does not function properly.  The symptoms of the disease include pain, fatigue and gastrointestinal issues.

Through a complicated series of events, Ms. Pelletier became a ward of the State of Massachusetts primarily because of a clause in the Boston Children’s Hospitals Policies and Procedures.

The hospital’s clinical investigations policy states (emphasis added):

Children who are Wards of the state may be included in research that presents greater than minimal risk with no prospect of direct benefit (46.406 (50.53) or 46.407 ( 50.54) only if the [institutional review board] determines and documents that such research is

Related to their status as wards; or

Conducted in schools, camps, hospital, institutions, or similar settings in which the majority of children involved as participant.

Pelletier_1While no charges of neglect have ever been charged against Jennifer’s parents, after she was transferred to Boston Children’s Hospital, she became a ward of the State of Massachusetts.  The parents no longer have any say in her treatment or where she is placed.  The parents do not know if she is part of any research projects.  For a time, they were not given visitation rights.

Jennifer was taken off of her medications.  When the parents saw her decline after being taken off the meds, the parents asked that she be put back on the medications that were helping her.  They reported that they were told that if they put Jennifer back on her medication, they would be charged with child abuse for giving her an excess of drugs.

In a meeting in October of 2013, ministry leaders from all over the country and Canada came for a day to sharing and prayer.  To a person, every leader came with one concern. What is going to happen to the people within the mentally challenged community when financial collapse happens in the US? Our members are financially and professionally tied to the state and federal governments.

I’ve never been  a prophet of despair.  However, this was a warning signal that even I could not ignore.  It may be time to prepare for the future of our friends and members who are intellectually disabled by storing up massive containers of prayer in the deposits of heaven.  The promises of God are that he will help the weak and take care of the wounded.  However, even recent history tells us that this vulnerable population has been a prime target for abuse.

The Lord uses men and women to do his work here on earth.  We are his hands and feet.  We need godly wisdom to know what our part will be in the future; and what our action should be today.

Minimum Wage Executive Order to Include People with Disabilities

white house signingWashington, DC (February 12, 2014) – Today, the White House announced that President Barack Obama will sign an Executive Order raising the minimum wage to $10.10 for all future federal contract workers, including workers with disabilities.

This Covers individuals with disabilities.  Under current law, workers whose productivity is affected because of their disabilities may be paid less than the wage paid to others doing the same job under certain specialized certificate programs. Under this Executive Order, all individuals working under service or concessions contracts with the federal government will be covered by the same $10.10 per hour minimum wage protections.

By including people with disabilities in his Executive Order, the President has opened the doors of equal opportunity to many federally contracted employees with disabilities.

Family Cafe logo

Dear Friend,

It’s almost time to register online for The Family Café’s “Sweet Sixteen,” The 16th Annual Family Cafe!

Online registration for The 16th Annual Family Café will open on another sweet occasion, Valentine’s Day, Friday, February 14th at 9:00 AM (EST). At that time, you will be able to visitwww.FamilyCafe.net to register. As part of the registration process, you will also be able to request Financial Assistance to cover the cost of your hotel stay at the Hilton Orlando, host site for The 16th Annual Family Café.

A PDF version of the registration brochure is available on our website right now. It can be viewed by following this link. Feel free to download the brochure and share it with other families in your community! If you wish to send in your registration form immediately instead of waiting until February 14th to register online, you can fax it to us at 850/224-4674 or mail it to The Family Cafe at 519 N Gadsden St., Tallahassee FL 32301.

Remember, Financial Assistance will be distributed through a lottery process. Whether you register online, by fax, or by mail, your chances of receiving Financial Assistance remain the same.

Also, if you register by mail or fax, there is no need to register again online after the online registration form becomes available.

The Family Café’s Sweet Sixteen will be held June 6-8, 2014 at the Hilton Orlando, 6001 Destination Parkway in Orlando.  A block of rooms has been reserved at a special conference rate of $109 per night.  To make a reservation, call the Hilton at 407/313-4300. Make sure to mention The Family Café to get the special room rate.

No matter how you register, please remember to mark your calendar for The 16th Annual Cafe! It should be a fantastic Sweet Sixteen weekend with much to offer you and your family. If you have any questions about the event or the registration process, feel free to contact us at 888-309-2233(CAFE) or by replying to this message. Otherwise, we will look forward to seeing you in June!

Thanks,

The Family Cafe

The Family Cafe 888-309-CAFE www.FamilyCafe.net

519 North Gadsden Street
Tallahassee, FL 32301
United States

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