The Riverbend Down Syndrome Association is a 501(c)(3) non-profit organization and can receive tax deductible contributions. Our Employer Identification Number is: 14-1982424. Congratulations to the following State Special Olympics competitors: Emmanuel Bishop (10) Silver: Golf Individual Skills [12 – Region 2, Spec Ed Coop] Christian Bristol (29) Silver: Aquatics 50M Freestyle Participation Ribbon: 50M Breaststroke [12 – Region 2, Highland] Ina Canady (23) Silver: Athletics 50M Run [12 – Belleville Parent-Teacher Organization for Exceptional Children] Maddie Harnar (9) Gold: Gymnastics Women's Uneven Bars Gold: Gymnastics Women's Vaulting Bronze: Gymnastics Women's Floor Exercise Bronze: Gymnastics Women's Balance Beam 5th Place: Gymnastics Women's All Around [12 – Belleville Parent-Teacher Organization for Exceptional Children] Madeline Rose Hill (19) 4th Place: Athletics Softball Throw [12 – Collinsville Kahoks, Collinsville] Joe Kane (16) Gold: Aquatics 50M Freestyle Silver: Aquatics 100M Freestyle; Bronze: Aquatics 4x25M Freestyle Relay [12 – Alton School District] Kyle Langa (9) 4th Place: Athletics Tennis Ball Throw [12 – Alton School District] Danielle Lanxon (10) Silver: Gymnastics Women's All Around Silver: Gymnastics Women's Floor Exercise Silver: Gymnastics Women's Uneven Bars Bronze: Gymnastics Women's Balance Beam 6th Place: Gymnastics Women's Vaulting [12 – Belleville Parent-Teacher Organization for Exceptional Children] Lisa Newbury (36) Gold: Powerlifting Deadlift [12 – Region 2, Highland]		Erika Slimick (9) Bronze: Athletics Tennis Ball Throw [12 – Region 3, Cottage Hills] Michael Stroh (20) Gold: Soccer Team Competition [12 – Belleville Parent-Teacher Organization for Exceptional Children] Jordan Kyle Stumpf (24) Gold: Aquatics 4x50M Freestyle Relay 4th Place: Aquatics 25M Backstroke 5th Place: Aquatics 25M Freestyle [12 – Belleville Parent-Teacher Organization for Exceptional Children] Eric Utnage (21) Gold: Powerlifting Bench Press Silver: Powerlifting Deadlift Bronze: Powerlifting Combination [12 – Region 3, Cottage Hills] What is the Home-Based Support Waiver for Children? The new Home-Based Support Waiver for Children will be a new Home and Community Based Medicaid Waiver 1915(c) for children with developmental disabilities in Illinois who are at risk of out-of-home placement. The waiver will provide services and supports to participating children to enable their families to keep them at home and avoid residential placement. The Waiver was approved June 6, 2007 and it is expected to begin enrolling additional children starting in January 2008. This means that new applications will be accepted for children whose families have completed the PUNS (Prioritization of Urgency of Need for Services) form [See Moonlight, October 2007: PUNS Is No Joke: What Is It? Why Should the Down Syndrome Community Care? by Michele Westmaas]. Note: Completion of a PUNS form does not guarantee eligibility for services or the provision of services, but it does make sure that the State is aware of individual need for services.
			moonlight is the newsletter of the Riverbend Down Syndrome Association. Editor: Victor Bishop Web Site: http://www.riverbendds.org/

Developmental Disabilities Services Metro East

Alice Devany, Associate Executive Director, alice@ddsme.org

2900 Frank Scott Parkway W, Suite 928

Belleville, IL 62223

St. Clair County: (618) 236-7957

Madison County: (618) 656-9663

• Children seeking services must have an active PUNS record
• PAS determines waiver clinical eligibility and submits "packet" to Network
• The Division of Developmental Disabilities reviews and mails Award Letter, if authorized for funding

• PAS helps family with completion of Medicaid financial application, collection of required documentation and submits for review
• Special Medicaid financial eligibility rules: Parents' income information is collected but waived for children up to age 19

• Be between the ages of 3 and 21
• Reside at home with their families and receive services in Illinois
• Be a resident of Illinois living in Illinois
• Be enrolled in Medicaid (special eligibility criteria — parent's income not counted for children)
• Have a developmental disability (either mental retardation or a related condition)
• Must be assessed as eligible for ICF/MR level of service (must need active treatment)
• Must meet priority population criteria as defined in Attachment A of the DHS contract
• Children who are wards of the state (DCFS) are not eligible
• Not be in need of nursing assessment, monitoring, intervention, and supervision of their condition or needs on a 24-hour basis.
• Not be receiving services in a long-term care facility or hospital. If receiving services in a long-term care facility or hospital, be prepared to move to an appropriate setting prior to receiving Developmental Disability waiver-funded services.
• Not be receiving services funded through another Medicaid waiver program at the time Developmental Disability waiver-funded services are authorized. This includes the Division of Rehabilitation Services Home Services Program and the University of Illinois, Division of Specialized Care for Children Technology-Dependent Medically Fragile Children's Waiver Program. If receiving other waiver services, the participant must terminate the other waiver services and choose the DD Children's Support Waiver prior to and as a condition of receiving developmental disabilities waiver services.

• Service Facilitation (55A)
• Personal Support (55D)
• Behavior Intervention and Treatment (56U)
• Training (55B) and Counseling (55C) for Unpaid Caregivers

• Adaptive equipment (53E)
• Assistive technology (53T)
• Home accessibility modifications (53H)
• Vehicle modifications (53V)

• Covered outside the monthly allocation
• Provides quality assurance and other advocacy assistance
• 25 hours per state fiscal year maximum

Down Syndrome Articles

Let us further inquire into the complications regarding classical Protestant soteriology from perspectives illuminated by the experience of intellectual disability. From a conservative Protestant point of view, "Persons who are profoundly retarded and have extremely low levels of comprehension are safe within God's saving grace. While the fact of salvation is a mystery in itself, what we do know about God is sufficient to know that His love encompasses those of a 'childlike' nature" (Nabi 1985:103). While this posture also accounts for the salvation of infants, it is inconsistently applied with regard to adults who are unevangelized. The usual answer that is given is that those who reach an age of accountability (which God recognizes) will then be guilty of their sins as their conscience pricks them, so that adults who die apart from believing in and confessing Jesus Christ as Lord and savior, even if unevangelized, will be subject to the judgment to come (Heb. 9:27). Part of the problem with this response is that nowhere does the Bible, which is the final theological and doctrinal authority for conservative Protestants, clearly introduce this idea regarding an age of accountability. In other words, if infants and the intellectually disabled will be judged graciously by God given their "low levels of comprehension," then will not God also judge the unevangelized graciously according to their various levels of comprehension? The reluctance of most conservative Protestants to make this further move can be understood, at least from a sociological perspective, as related to the fact that infants and intellectually disabled are members of their own families, friends, and churches, whereas the unevangelized are usually also strangers, ethnic and racial others from distant lands, or people in other religious traditions.

Alternatively, other conservative Protestants discussed the salvation of the intellectually disabled in this way: "Eighty-nine percent of the retarded population is in the Educable category. Many of these people have reached an age of accountability" (Tada and Newman 1987: 17). Even if we granted the notion of the age of accountability, there are three further questions that arise. 1) What is the age of accountability, and how is that determined? Is the age of accountability that of educability, as implied in the quotation? If so, is not that also rather problematic as educability is a fluid process by any standards of measurement. 2) What about the other 11 percent who are not educable? Are they lost or saved because of their lack of educability? 3) Is the criterion for believing and confessing indispensable for salvation?

It is this last assumption that may be the most problematic theologically, as our experience with people with intellectual disability is slowly revealing. When it is written, for example, that "Those who believe in him are not condemned; but those who do not believe are condemned already, because they have not believed in the name of the only Son of God" (Jn. 3:18), it is fair to ask whether or not those who are condemned for not believing are the unevangelized or those who have heard and understood the gospel but nevertheless have rejected it. The usual response is that the condemned are the unevangelized if referring to adults but not if referring to infants or the intellectually disabled since the former are capable of believing and confessing while the latter groups of persons are not. Beyond the fact that this distinction seems rather arbitrary, what about the fact that in the Johannine gospel, faith or belief is not only a cognitive act of assent to propositions but also a personal posture of trust and commitment to act out that trust (Moloney 1993: 198)? Further, there are numerous other scriptural criteria regarding salvation: e.g., doing the will of the Father (Matt. 7:21); feeding the hungry, clothing the naked, caring for the sick, and visiting those in prison (Matt. 25:31-46); doing good versus evil (Jn. 5:29).

The point is not to insist on a salvation of works rather than one of grace through faith. In fact, even shifting to a works-salvation is problematic since the severely and profoundly disabled are as incapable of works as they are of believing and confessing in Christ. At this level, as the introductory quotations [Ed.: at the beginning of this chapter] of both Jesse and Noreen imply, people with intellectual disabilities are not motivated to earn their salvation by loving or caring for others, but their love and care for others seemingly bubbles forth from a profound sense of interrelationality. But then, for the moderately and mildly disabled, the problem arises on the other side: that of a "behavior mod God" who rewards them for good behavior and punishes them for bad behavior (see Webb-Mitchell 1993: ch. 22). To shift from faith to works in the case of people with intellectual disabilities would be counterproductive to nurturing faith and the reception of God's grace.

What about the possibility of postmortem evangelization with regard to people with intellectual disabilities? Wolf Wolfensberger speculates (in Gaventa and Coulter 2001b: 77) that, "when a human soul departs the body without having had the opportunity to exercise intellect and will to decide for or against God, God will do what He apparently did with the other spirits, viz., the angels: upon departure from the fallen body and its shackles, God offers the now unimpeded soul a sufficient glimpse of His identity to enable it to make a fundamental choice." While an admittedly exploratory idea, the only developed tradition of thought regarding postmortem salvation is the Roman Catholic doctrine of purgatory, and that is only weakly attested to in scripture. Further, Wolfensberger's hypothesis seems to involve a number of problematic metaphysical assumptions such as anthropomorphic view of spiritual beings (angels and evil spirits), a static notion of eternity, and a dualistic (body-soul) anthropology. While we will discuss the eschatological existence of human beings in the next chapter, suffice to say at this moment that the idea of a postmortem evangelism of people with intellectual disabilities such as what Wolfensberger proposes, while appealing in some respects, is unnecessary at one level and raises more theological and philosophical questions than it answers to be of much assistance.

Where then are we with regard to soteriology in general and to the question of the salvation of people with intellectual disability in particular? One response is a humble agnosticism, certainly appropriate when prioritizing salvation as God's initiative and therefore as belonging to God to pronounce. Another response might be to distinguish between pistis (faith) and gnosis (knowledge), and say that human beings are always in a pistis relationship with God, even if some might not be able to articulate that in terms of gnosis (Trembley and Trembley 1999: 76-80). Since genuine pistis can never be fully displayed through gnosis, we should engage people with intellectual disabilities on the level of pistis rather than of gnosis level. The problem here is both that faith seems stripped of all content and that there is an implicit universalism which undercuts libertarian human freedom.

Say the word "inclusion" to any parent who has a child with Down syndrome and they will not be able to keep quiet. Whether it is grade school, middle school or high school, every parent has a strong opinion about the positive and negative sides of this hot topic. The main focus of the Down syndrome community has typically been academic inclusion—how children with Down syndrome are "mainstreamed" into curriculums and academic plans. But there is another facet to inclusion which has recently received a lot of attention—the social aspect.

Social inclusion can be defined as a child's acceptance by his peers within a given situation. According to Gary Siperstein, Ph.D., professor and director of the Center for Social Development and Education at the University of Massachusetts in Boston, social inclusion is usually measured by sociometric techniques in which children in inclusive classrooms are asked to identify their friends and who they would like to work and play with.

"Social inclusion can be defined in terms of the degree to which children are part of cliques and groups within a grade and experience friendships in which there are reciprocal positive feelings," Dr. Siperstein explained. "In more dramatic terms, social inclusion represents the degree to which the child is part of the classroom community and feels a sense of belonging."

However, there is no one-size-fits-all formula to create that sense of belonging. Schools can be mandated to develop curriculums and provide teaching assistance to children with disabilities, but there is no state or federally-mandated way to control how students with Down syndrome are incorporated into school life. The social structure is controlled by the students—which makes the situation varied and unpredictable.

"It is assumed that if there is physical inclusion and instructional inclusion, then social inclusion will automatically follow. Much of the research, however, does not support this contention," Dr. Siperstein continued. "In fact, the recent research shows that children with intellectual disabilities are more than twice as likely to be rejected or isolated from their peers as children without intellectual disabilities."

Watching a child face rejection makes many parents question what type of classroom experience is best for their child. In December 2006, the Wall Street Journal published an article titled "Eli's Choice," in which a teenager, who had been learning in a mainstream classroom, chose to switch to a special-education program when he entered high school. This sparked a debate in the community about what is really the best way to approach social inclusion.

The academic portion of inclusion is easier to evaluate because scientific measures can be used to look at specifics, such as: how a student's grades have improved, the percentage who are employed after graduation and the salary levels they obtain. But how do you measure if the other students consider a child with Down syndrome to be their peer or how often they are invited to a classmate's birthday party?

For Eli, the student featured in the Wall Street Journal article, social inclusion in a mainstream school was not the answer. Though Eli's parents provided every form of assistance to make the mainstreaming program work for him, he was ultimately unhappy in the social aspects of his education. However, pulling Eli out of regular classes was not an easy decision. For years, the Down syndrome advocacy community has been fighting for a more level academic playing field. Having heard for decades that students with Down syndrome should be mainstreamed for a variety of growth and developmental benefits, it seems to go against conventional wisdom to decide to not mainstream a child.

Parents in this situation have said that it feels like they are letting people in the Down syndrome community down when they pull their child out of a regular classroom. Eli's parents realized that part of their drive to keep him in the regular classroom had more to do with what they felt they should do, instead of what was best for Eli. When they looked back and remembered the times that they saw Eli being excluded and unhappy, they understood why putting him in a class with other students like him would be the best decision.

As the debate in the community continues to rage, many parents are finding themselves having to take a step back to realize that they know their child better than anyone else. They are doing their research, evaluating their options and most importantly, speaking to their children about what they would most like to do.

For Connor Long's parents, that means keeping him in a mainstreamed school. Brian Long, father of 12-year-old Connor, feels that his son does well in his classroom environment because he has been a part of inclusive classrooms from the start of his academic career. "It is not that we are trying to pretend he is absolutely 'normal,'" Brian says. "But we believe his behavior and social skills will be more typical if he spends most of his time living in the typical environment."

Connor is currently involved both in his classroom activities and in post-curricular groups such as performance band. Connor's participation in an integrated classroom has not always been easy, but his parents feel it is crucial to his academic advancement. His fit in the classroom has not been questioned by fellow students as much as it has been by adults trying to manage their jobs while being challenged and constrained by policies, paperwork and limited staff resources. Social inclusion can work when there is concentrated effort from both parents and faculty to create an environment that is appropriate for the needs of each child. Though working within the school structure is important, parents need to take on the ultimate responsibility for their child's inclusion.

"You have to make the time and find—or create—the opportunities for your child to interact with typical children in activities outside the classroom that help your child grow. We found that organizations with structured group activities, such as Cub Scouts, were great for Connor," Brian added. "He developed friendships outside of school while engaged in education and fun activities that he'll have and cherish for a lifetime. It was also a great social engagement for us as his parents."

Brian believes Connor has been socially accepted by his peers. In fact, Connor gets annoyed when his parents try to assist him too much. Like any student, he wants to prove that he can do something on his own. Some students do stand out as being more accepting of Connor, and Brian has come to learn that many of those students have someone else in their life with a disability. Brian also credits the racially and ethnically diverse area they live in as a force behind Connor's acceptance. An individual with Down syndrome is just another student in a school with an already diverse population.

Connor's parents also face the same struggles that Eli's parents face daily. Though Connor seems to be thriving in his current environment, Brian is not sure if he will always be a part of a mainstreamed classroom. As children get older, they notice differences more acutely. So what works in grade school may not in middle or high school. Brian wants to ensure that as a parent, he is not exclusively focusing on Connor's academic advancement while underestimating the social changes and influences that become more dramatic later on.

"It is a perpetual struggle to know what to do. Since we are at a point where the inclusion battle is fought on a daily basis, it is important to us to look for opportunities for systems and mindset changes as we work through Connor's education," Brian observed. "While we hope and work for Connor's passage through school to leave a path that makes it easier for future students and parents to navigate their own journeys, ultimately, we have to do what we think is right for him to get an appropriate education."

One of the critical components of social inclusion is that the other students see the disabled child, and he or she sees himself, as a full participant in the classroom and the school. Every activity or assignment the child participates in will underscore this point, even if it is modified or adapted. Social inclusion is a success when students see each other in terms of similarities rather than differences and measure success based on how far each of them has progressed rather than on a comparison with each other's achievements. This creates a positive learning environment for everyone.

For students with and without disabilities, the social experience at school is as important as the academic one. Dr. Siperstein believes that students with and without disabilities can benefit from social inclusion.

"We need to promote positive attitudes and a positive classroom environment to support those attitudes. But changing attitudes is not an easy task," Dr. Siperstein explains. "A false assumption among many educators is that the physical presence of children with disabilities in inclusive classrooms will change the attitudes of the non-disabled students. Promoting positive attitudes is a complex process that takes a lot of effort. Emphasis needs to be given to developing a positive classroom environment where all children's efforts and achievements are rewarded. Further, teachers need to help children recognize the competence of and appreciate the effort exhibited by their peers."

Social inclusion is a critical issue for all students with disabilities whether the student is educated entirely in special education classes or is fully or partially included in regular classes. Many agree with Dr. Siperstein that it is time to step back and ask the question; who is best served in an inclusive classroom? Though conventional wisdom supports fostering an inclusive environment, not all children will be socially accepted in all classrooms. In the end, parents need to weight the benefits of the classroom setting vs. their own definition of happiness and success for their child.

It is interesting, to me, how many people talk about their child's stubborn behavior as if it was part and parcel with having Down syndrome. It isn't.

There are many people who are stubborn who do not have Down syndrome. In fact, in some situations being stubborn is seen as a positive trait. I have heard people say that the reason they came out as winners in a situation was because... "I was stubborn and no one was going to push me around." "They thought I would cave, but I was too stubborn to give up easily."

So, what is this stubborn behavior that we see with students who have Down syndrome and how could we think about it?

I see stubborn behavior as a direct result of lacking the skills and/or language to negotiate a position.

Often, we will take a stance on something we care about and, right or wrong, stick to that stance until we understand or agree with another's view. A student with Down syndrome will continue to do things in a specific way because it is safe, it is known and it has worked in the past. When we try to change their behavior, when we try to introduce new things, we threaten their "safe place."

Some of us are open to change and will accept change far better than others, this is the same with students with Down syndrome. Some of us are able to argue our side of the issue, some of us can be persuasive and bring people to our view and not have to change — the other person changes.

Students with Down syndrome cannot do this as well. He/she lacks the language, the cognitive flexibility needed in verbal discourse and the larger world view to win many verbal arguments. So... he/she looks stubborn.

Think about it. If you were in a situation where you did not understand what was going on around you and people were trying to get you to do something you were unsure of, what would you do? You would resist, you would stay doing what you know, and you would be seen as stubborn. What if you did not have the language skills to share your views, what if the other party did not understand you or did not care about what you had to say? Then, you were punished or censured because you were seen as stubborn. How would this affect your level of cooperation the next time? How would you respond to these people who "made you do something you did not understand nor even agree with?" You may become even more stubborn or resistive. And, they, in turn would see this as "non compliance" or as a "problem." They would respond in a way that assumes that your stubbornness is something that exists on its own; apart from you having a different view of the same situation or apart from you being unable to communicate your point of view successfully.

How can we change the pattern?

By letting go of the myth of stubbornness and seeing stubborn behavior as resistance.

Resistance to something new, resistance to something that is not understood, resistance to having others being in control, resistance to someone they may not trust or understand. The only way to help anyone become less resistant is to help them to feel safe enough to try something new or different.

When a child is young, s/he will not respond very well to changes; s/he will withdraw. As s/he grows older, s/he will use the strategies that have worked in the past... withdrawing, not looking, pouting, sitting, throwing herself down (stubborn looking behaviors). The more stubborn a student looks, the more useful this behavior has been in the past; using this repertoire of strategies has allowed the student to remain in his/her safe place. Adults are part of the problem. We have taught the child what s/he needs to do so we will stop pushing or so we will leave them as they want to be. Then, sometimes, we become angry. As we become angry, the child resists further as s/he does not understand what is happening and is often upset with the situation as well. How many of us respond to anger if we are nervous about a situation? How many of us would become less "stubborn" if someone demands that we do something that we are not sure about?

When faced with a student who appears to be stubborn, think about the following:

1. Although this makes sense to you, it must not make sense to this student. How can you help the student gain a better understanding of what it is you are wanting? Remember, saying that it is "good" for them is not helpful. Can you show, act out, the positive outcome of the request? Can they try it in small steps? Can you find a way to make it clearer, less threatening? What kind of language are you using'?
2. Is there a way to help the student use other means to say... "no", "wait", "this is scary", "you want me to do what?" other than the behavior that is being seen? Until a student has some way of communicating with others, the resistance will look like stubborn behavior. If you were in a situation where you did not understand what was going on around you and people were trying to get you to do something you were unsure of, what would you do? You would resist, you would stay doing what you know, you would be seen as stubborn.
3. Follow the old adage... "Win them over with honey"... any human being will respond to positives over coercion. Always enter a new situation using something that the student likes from other situations, go from what the student already knows and build on it. Pair a new experience with something that is already successful and liked by the student. Use play, songs, games, etc. to help a student deal with new experiences. Watching another student have a success may not work as some students do not learn from watching others as they may not understand that they too could have that success.
4. You need to have a trusting relationship with anyone before they will try something new just because you told them to do it. Some students take a long time to reach that level of trust. You cannot be the "punisher" and build a trusting relationship with a student. You cannot coerce some behaviors and reinforce others; this inconsistency will stress a student; the student may never feel safe enough with you to let go of those behaviors that help him/her to feel safe.
5. When you feel yourself becoming angry, stop, laugh, walk, relax, count, etc. Release the tension in the situation and then try again... maybe in a different way. Sometimes a student will come around just because you have calmed down and re-entered the relationship in a way that is not threatening to the student. Some of the best people are just stubborn enough to hang in there when many others have given up on a child. So, join them. Be stubborn about a child's ability to learn and help him or her to feel safe enough to venture into new territory with you by his or her side.

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