Good News!

Advocate, Community Participation, Disability, Down Syndrome, Education, Inspiration, Siblings No Comments »
Jane and Billy Schulz heard good news about Rosa's Law.

Jane and Billy Schulz heard good news about Rosa's Law.

U. S. Senator Barbara A. Mikulski from Maryland announced that her bill introduced to eliminate the terms “mental retardation” and “mentally retarded” from federal education,  health and labor laws passed the Senate on Thursday night by unanimous consent.

This is big!

For months people have been blogging, emailing, and twittering about the misuse of the “R” word. If you would like the background and my response to this effort, you may look at my earlier blog on the “R” word.

Called “Rosa’s Law,” the bill changes the phrase “mentally retarded” to “an individual with an intellectual disability” in health,  education and labor law. Senator Mike Enzi, a co-sponsor of the bill, states that “The bill is simple in nature but profound in what it will do when it is enacted. For far too long we have used hurtful words like ‘mental retardation’ or ‘ MR’ in our federal statutes to refer to those living with intellectual disabilities. While the way people feel is important, the way people are treated is equally important. Rosa’s Law will make a greatly-needed change that should have been made well before today – and it will encourage us to treat people the way they would like to be treated.”

The passage of this law does not guarantee that people will cease to use pejorative terms to describe those who have disabilities, but it is a start. Local and federal agencies will be required to use the new term, as will school personnel. I remember, as a special educator, having to inform parents that their child had been identified as having mental retardation; I also remember their reactions. I hope that this new term will be kinder and more readily accepted. However, there will always be a need to insure that children with disabilities of any kind are treated with respect, regardless of the label used.

I think the most important aspect of this law is the way it was initiated and voted into law. The inspiration for the law came from the actions of a family whose daughter, Rosa, was diagnosed with Down syndrome and labeled retarded at school. The mother teamed up with other parents and her state delegate to introduce a bill to change the terminology in her home state law. A hearing on the implications of changing the law was held prior to consideration at the Maryland  General Assembly.

At the hearing, the testimony that had the greatest impact was given by Rosa’s 11-year-old brother. He said “What you call people is how you treat them. What you call my sister is how you will treat her. If you believe she’s ‘retarded,’ it invites taunting, stigma. It invites bullying and it also invites the slammed doors of being treated with respect and dignity.”

This story is a perfect example of effective citizen advocacy, according to Senator Mikulski. She said that this family “pulled together to pull us all to another way of thinking. They fought for the respect and dignity of a loved one. The more than 6 million people with intellectual disabilities in America deserve that same respect and dignity.”

A similar bill has been introduced in the House and has 63 co-sponsors. The law does not affect any services, rights, responsibilities or educational opportunities for people with intellectual disabilities.

There is no end to what we can accomplish when we pull together!

Do you think this law will make a difference?

On My Soap Box

Adults with Down Syndrome, Advocate, Down Syndrome, Education, Family Challenges, Inclusion, Parents, People with Disabilities, Special Education 3 Comments »

Almost 50 years ago my son Billy was denied entrance into a special education school because he wasn’t 8 years old. We enrolled him in a regular kindergarten class where he blossomed as he interacted with non-disabled children. That started my firm belief in inclusion of children with disabilities into regular classes. After he entered the special school, I continued to seek opportunities for him to participate in non-segregated situations.

I belong to the generation of parents who fought for Public Law 94-142, the Education for All Handicapped Children Act (later amended to be called the Individuals with Disabilities Education Act or IDEA). I gladly joined other parents in pushing for this legislation and rejoicing in its passage. Although it was implemented the year that Billy graduated from high school, I knew that many other children would benefit from its mandates.

The principle of PL 94-142 that is used for the rationale for inclusion of students with disabilities into regular classrooms is referred to as Least Restrictive Environment. The mandate states that “To the maximum extent appropriate children with disabilities… are educated with children who are nondisabled…”

Thus it pained me to read the blog of a mother whose child has been denied the benefit of inclusion. Her daughter, who has Down syndrome, had a successful year in kindergarten. It was determined by the mother and the teacher that repeating kindergarten would benefit the child and the Individualized Education Plan was developed on that premise. At the meeting to plan goals for the coming school year, the mother was informed that her child would be placed in a special class for children with severe disabilities (a living skills class) and would not be engaged in any academic activities.

There is an involved process where parents can dispute the decision of the school personnel regarding placement of a child who has disabilities. This parent went through the legal process and was so disappointed and enraged with the school’s point of view that she gave up the fight and decided to home school her daughter.

Research and experience clearly demonstrate that children with disabilities learn more when included in regular classrooms, where they have normal patterns of speech, behavior, and learning to emulate. I believe in this so strongly that I am disappointed in the outcome of this particular case. To add to my dismay, 95 people have commented on this blog, mostly to applaud this mother’s decision.

I must make a plea to these parents who choose not to pursue their rights. If we do not insist on the mandates of IDEA being followed, they WILL disappear. Please, families, stay the course – insist on the best situation for your child. If the school disagrees with you, the success of your child will change their views.

There are many teachers and administrators who are diligent in insuring that children with disabilities are placed in the least restrictive environment and are receiving the services to which they are entitled. These professionals are concerned with providing the best education possible to ALL children.

I’m sure that on Billy’s file there was a stamp that read “Pushy Parent.” Believe me, if I had it to do over, I would have pushed harder. We must be proactive if we wish to secure the rights for our children to have the best education possible.

Welcome to the Grown Man Now blog!

Community Participation, Down Syndrome, Education, Mother of an Adult with a Disability, People with Disabilities 16 Comments »

We have been writing on blogspot and have decided to bring our blog directly to our website. Click on this image or the tabs above to explore the rest of the site, and come back to talk to us!

A screen capture from the Grown Man Now website.

Read Billy Schulz's blogs: "I Got a Good Life"


Adults with Down Syndrome, Community Participation, Diversity, Down Syndrome, Education, Inclusion, People with Disabilities, Uncategorized 4 Comments »

While equal opportunity employment is a vital element in the inclusion of persons with disabilities into the community, there are other important ways to help accomplish this goal. An organization called SHOUT (Students Helping Others Understand Tomorrow) makes a concerted effort to introduce diverse groups of people to selected high school students.

SHOUT is sponsored by the Kingsport Chamber of Commerce and is designed to inform future leaders of possibilities for service in the area. For several years, Billy and I have been asked to meet with the group on Diversity Day, one of the five categories in the program. One of the stated goals for this session is: “To initiate, foster, and promote an understanding and appreciation for all people and their unique perspectives and contributions to the world.”

My thrust is the development of attitudes from tolerance to acceptance to celebration of diversity. Billy shows his slides, pointing out the normalcy of his life and the importance of his family. His real message, however takes place during his interaction with the students at lunch time and after the program. Initially reticent, they find that he is easy to talk with and fun to be around. Evaluations referred to it as “an eye-opening day,” stating, “Billy was awesome; it was definitely an amazing experience.” In planning their graduation ceremony, the students asked that Billy hand out their certificates. On the appropriate night Billy, dressed in suit and tie, shook hands and gave out certificates to all the students. At the end of the program, students write letters to thank the session leaders. One letter addressed to me read:

We were very privileged to have you speak to us on Diversity Day. Your presentation was a touching and heartwarming experience. Not only did you show us that you should not be ashamed of or try to hide your differences, but you urged everyone to CELEBRATE what makes them special. I think nearly everyone can agree with you that Billy has a way of teaching people that no one else is capable of. He has an extraordinary gift and that is something to celebrate.On behalf of everyone in the SHOUT program, thank you. We were blessed to have you!

It is a joyful opportunity to be involved with this group – future parents, professionals, and employers.

Do you know of community organizations that encourage and promote the inclusion of people with disabilities? Is there potential in any of your social organizations to develop such ideals?

Unique Challenge?

Adults with Down Syndrome, Down Syndrome, Family Challenges, Independent Living, Parents, Siblings No Comments »

Billy is a hoarder. We always called it a “pack rat” and thought it was somehow connected to his having Down Syndrome. I located an entry in my journal dated January, 1999.

John is on the way to build shelves in Billy’s study for his media center. We have worked for weeks to empty this tiny room with 17 years’ collections in it.

When we moved two years later, much of Billy’s “stuff” mysteriously disappeared. However, we moved into a larger house and like a carp thrown from a fish bowl into a pond, Billy’s stuff adapted to the size of its environment. The TV Guides, 8 track tapes, and xeroxed copies of Jane Fonda were no longer there, but the system grew to include video tapes, Peoples Magazine, and DVD films. Again, with the help of Billy’s siblings, we sought a solution to the unwieldy collection.

Tom spent most of last week converting a rarely used garage adjacent to Billy’s apartment into a new media center. It contains many shelves, a place for a spare bed, niches for Billy’s desk and his stereo player, and a spot for his exercise machine. In his usual manner, Tom created a beautiful room, professionally built and thoughtfully made to accommodate Billy’s treasures. Needless to say, Billy is thrilled with the results and is moving slowly to make it a true media center. Mary hauled trash (my term), purchased materials, cooked meals, and was on hand for any errands.

Ironically, in Sunday’s newspaper, I noted that one of the TV stations listed about four hours of programs about hoarding. I watched some of the stories and was amazed at the gravity of this compulsive disorder. Apparently there are around three million people in the United States who are living in dangerous, unhealthy situations created by hoarding. In the recorded versions the treatments required a clinical psychologist or certified organizer plus dozens of vans to haul away things people had saved. In one situation it was revealed by the children that before their father died he had for years removed his wife’s collections on a regular basis.

I no longer regard Billy’s disorder as a “unique challenge.” The unique aspect is the remarkable and loving help from his siblings.

Billy’s new Media Center takes shape.
Our family’s greatest gift is the ability and desire to work together.
There was excitement, some tension, and a few cross words.
But mostly there was love.

Please share how you deal with your unique challenges.

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