The Support Intensity Scale Interview

UPDATE; I attended the meeting for the SIS and it was interesting to say the least. You have to picture yourself out of the picture, your child is left alone -- what can he/she do for himself/herself. Questions cover a work setting, home setting, personal care, medicine disbursement, friendships, recreation, safety issues, and community life. There are several ratings you can choose from and you have to think on 3 different levels: what can your child personally/physically do for him/herself, how often would your child (based on them being a 'regular' age-appropriate young adult do these things and how long would it take a 'regular' age-appropriate young adult take to do this activity. For example: would your child know what to do in an emergency? (call 911?? tell someone??) You would choose to answer 'no' or to what extent would he/she need help to do that or does someone need to do it for them?? How often would you need to monitor your child to see if they would need to call for help and for how many hours during that time period? These questions can open your eyes to what you can still try to educate your child to do or just know that there will always have to be someone around for them. We now have the SIS interview which will help determine funding for Will's adult services. This focuses on what the person with developmental disability NEEDS not lacks so they can live independent lives. It measures support requirements in 57 daily activities and 28 medical and behavioral areas. While this helps to aid in support it follows to help with funding. Click here for more information. SIS measures support needs in the areas of home living, community living, lifelong learning, employment, health and safety, social activities, and protection and advocacy. The Scale ranks each activity according to frequency (none, at least once a month), amount (none, less than 30 minutes), and type of support (monitoring, verbal gesturing). Finally, a Supports Intensity Level is determined based on the Total Support Needs Index, which is a standard score generated from scores on all the items tested by the Scale. From aaidd, American Association on Intellectual and Developmental Disabilities: they list the benefits of using the SIS for transition planning are -- ** Has all the domains required to successfully identify post-secondary support needs for a student with an intellectual disability including post-secondary education; vocational education; integrated employment; continuing and adult education; adult services; independent living; and community participation. ** Contains 28 additional areas on the Scale help gauge exceptional medical and behavioral needs of the student. ** Measures supports for a person in a community and is therefore a natural fit for planning post-secondary supports for a student in community settings. ** Is a norm-referenced tool as opposed to a check-list. The SIS was normed over 2 years on 1,308 people with varying degrees of intellectual disability from the ages of 16-72 within the United States and two provinces in Canada. ** Contains a ready-to-use graphical display of profile of high areas vs. low areas of support needs to help transition planners in planning and decision-making ** Measures support needs directly, and the explicit and direct information provided by the assessment scores takes the guessing out of the transition planning process. All items are clearly ranked by frequency, type, and duration of support required. ** Is a positive planning tool that focuses on the needs of a person as opposed to deficits, making the transition planning process optimistic and promising ** Available in convenient web-based format, which can be integrated into existing systems if needed. If you would like to see questions on the SIS, click here.

A Special Home Run for a Down Syndrome Boy.

Todd Frazier, of the Cincinnati Reds, delivered on a request made by Ted Kremer, a boy with Down Syndrome -- get a home run. Ted was the bat boy at the time, a spot won for him by his parent's in 2012 during a silent auction. Even though he was over the age limit, the Reds let it. So back on August 17th, Ted performed all the duties of a bat boy, doing so well the team brought him back on another night. On this next night, Ted asked for 2 things -- 11 strikeouts for a free pizza and a home run from Todd. He got the 2!! “He’s so funny, he said, ‘C’mon, hit me a home run, I love you.’ I said, ‘I love you too, I’ll hit you one,’” Frazier recalled after the team’s 11-1 victory over the Marlins." You can read the original article on the Cincinnati.com site.

Transition Stories.

As I continue to do the paperwork and contact the appropriate agencies for help, I am also looking at agencies that help find work. There are several. There are companies that hire people with disabilities; my list is for those looking for something else. I also think of an agency that interviews the person, their family and friends to see what he/she might be interested in doing on their own. I like that idea. This started me thinking, my husband would say 'look out' or 'I could smell that smoke', about possible types of jobs that could be considered a business that they could do, work from home or a family business. I understand they cannot make a lot of money due to SSI regulations so it would be part-time/on a small scale. These can also be done using a mentor. There are agencies that have folks who want to mentor a challenged child/adult or use a Best Buddies person. Here are some possibilities - just ideas I toss around in my head especially after I leave a place or talk to someone who owns a business: *bake cookies or cakes to sell to friends or family (this one came up during a seminar - someone's son was doing it and loved it); *walk a dog/take care of a pet for neighbors or family; *work with a local small business -- we go to a local car repair business, I think a small 'stand' could be set up selling coffee and snacks, on a Saturday for instance. After visiting mom at the nursing home and hospital, how about working with a local gift shop setting up a place on the weekends selling some items or take some items from the hospital gift shop around to some floors and help sell. The young businessman or woman keeps a percentage of what they sell. At nursing homes, they can sell on weekends or family nights; *collect scrap metal, cans and/or bottles and sell them. They would be helping the environment as well; *if they are artistic do some art work and place it in local businesses; **this one I had started trying to work out a plan to do for Will and maybe a few others in his group (or for his work group in school) but due to family illnesses and my work gearing up I did not get far. I still think it is viable. The idea came from my mother actually -- she was commenting on how she has a hard time getting to the cemetery to put flowers on family graves. So what about a business where people can go for them? They advertise in churches, funeral homes; they charge a straight fee to order either fresh or artificial flowers or a flag; who goes can clean the stone a bit and maybe say a prayer. Take a picture to show their client what it looks like. As I doing more preparation, and looking at all the papers and booklets I have accumulated regarding transition, I came across a magazine, called Autism Advocate, given to me by a neighbor. It is dated March 2007. The reading, though some of the statistics are probably not the same, is still pertinent today. There was one particular article called "Moving Into the World of Employment" written by Cathy Pratt, the Director of the Indiana Resource Center for Autism & ASA Board Chair. It basically talks about what employers/service providers really need to know when working with autistic adults. There are 10 points that she makes and expands upon which gives employers insight into how to best work with autistic employees and make the experience a win-win situation, a situation that best lets the employees shine and can help the company environment shine. The following is a short-order version of the article. * Have a through understanding of ASD (autism spectrum disorder), the spectrum & diagnosis is a must. Service providers need to understand the complex nature of ASD and know that there are no generalized services that universally apply. ASD is a neurological disorder, not emotional or a mental illness. * People with ASD require a creative and careful assessment process. Many ASD people have unique skills not obvious during the transition process. Personal skills are shown through careful observation, interviews with those who know the person, and a longitudinal assessment process. * Think outside the box. Services and vocational programs are usually offered in terms of what is available, instead of what the person needs or is interested in doing. Also it should not be assumed that the person with ASD who has communication and socialization issues, has the same type of challenges in other areas. Assume the opposite, most other areas are better developed. * Be aware of sensory processing challenges. Dealing with sight and sound can be different than that of their co-workers. Accommodations should be made so coping skills can develop. There should be opportunities to leave a stressful environment from time-to-time, without consequence. * Build on strength. Address a person's strengths and interests rather than focusing on what the person cannot do. * Prepare, Prepare, Prepare. Make sure the person understands what will happen -- during the assessment, at the work-site, and during work-training. Best sometimes to use visual supports. * Communication should not be all talk: fewer words used often. Some ASD people use many words but in actuality, have a limited receptive language. Best to use more written and concrete communication and directions, like developing schedules and visual sequences of tasks and information about the 'rules' of work. Also sarcasm, innuendos, and double meanings are lost so directions can be confusing or meaningless if these are used. * Carefully consider the environment & predictability of the job. The worst is the workshop-type

setting: too many people, loud and no where to go. As well, seasonal, ever-changing jobs increase anxiety. Best to be put in a setting of predictability and stability; it creates an efficient and successful employee. *Social expectations require instruction. Prepare the person for the rules of the job, teach expectation, rehearse how to greet people, ask for help, engage in small tasks, and accept or give complements. * Systems must work together (delays can be deadly). Local agencies must work with schools to identify students early, work with the school team to get to know the student. Then they must identify adult services and potential employments. As Cathy sums it up: "As your son or daughter moves from the public school system, which has clear legislative entitlements, to the adult world of eligibility, it is important to have a vision for your child. Examine the possibilities." In order to access the entire article, you may need to register as a member of the Autism Society. It is FREE and offers a lot of valuable information. You can find the whole article here.

Food With a Side of Hugs in One Place.

On the 'Today Show' there was a story about a young man with Down Syndrome who runs a restaurant in New Mexico. Tim Harris, 27, was able to open up 'Tim's Place' with the help of his family. He had been working in restaurants while going to school and received certificates in Food Service and Office Skills from a local university. According to the story, it is most likely the first restaurant owned and operated by a person with Down Syndrome. Tim runs the front of the restaurant while his brother helps as well. As well as serving up a New Mexican fair, hugs by Tim are literally on the menu and 'freely' given. There is no charge but they do keep count of how many have been given out. As Tim says his motto is: "If you can dream it, you can do it'". Take out your tissues and watch the video.

Early Intervention: Not Only for the Young.

Early Intervention in the school system is a wonderful program for the very young.

Early intervention applies to children of school age or younger who are discovered to have or be at risk of developing a handicapping condition or other special need that may affect their development. Early intervention consists in the provision of services such children and their families for the purpose of lessening the effects of the condition. Early intervention can be remedial or preventive in nature--remediating existing developmental problems or preventing their occurrence. Early intervention may focus on the child alone or on the child and the family together. Early intervention programs may be center-based, home-based, hospital-based, or a combination. Services range from identification--that is, hospital or school screening and referral services--to diagnostic and direct intervention programs. Early intervention may begin at any time between birth and school age; however, there are many reasons for it to begin as early as possible. (from 'Kids Source Online) Both our oldest and middle boys started in a local program pretty much as soon as they moved in with us since they were starting to be enrolled while in foster care. If you have any concerns about your child, you should start with your pediatrician. In MY opinion, it is best to make sure your pediatrician feels that there may be a developmental concern and he/she can refer you to an agency or school program. Our 2 boys went to a program in a facility that is basically for developmentally delayed children and adults. But after a year maybe a year and a half, they moved onto pre-schools. Our oldest (who still wants to be anonymous) continued on through the regular school curriculum. Willie continued on through Special Ed with an IEP. Either way, the Early Intervention program was great. I was able to stay during their sessions and watch and they loved it as the teachers 'played with them' and worked with their plan. The same concept of early intervention is good for the elderly. My mother was concerned as she got older and started developing slight tremors since Parkinsons runs in the family and was forgetting things occasionally. We also have dementia, Alzheimer's, cancer, heart conditions, diabetes -- my future should be an interesting roll of the dice -- maybe whatever I get, my mind may be at a point that I won't care!! Close to the end of her time, she did have mental issues that we were not sure if it was dementia or delirium (see said post "Delirium or Something Else").

Anyway, what I was getting to WAS mom decided that she wanted to get checked out and was referred to a local Memory and Aging Clinic dealing with the mental status in the elderly. We went several times over a couple of years to get tested, reviewed, have a check-up. The doctors were wonderful, very easy to talk to, work with, patient, pleasant. They made the experience very comfortable. While mom was being tested, I was filling out a questionnaire dealing with how I see her going through her daily life skills. The testing did not take long and it was some visual and some memory testing. Also there was an exam for the Parkinson's. According to them, there was no worry about the Parkinson's and the level of forgetfulness was normal for someone in her a 80's. This put mom's mind at ease. It was great because they were always available for talking on the phone if we had any concerns or questions. The doctors said that if at any of her future visits they found that there was evidence of dementia or Alzheimer's, there are very good new medicines that have slowed its progression. The doctors were very confident in trying these meds. They said there has been good results with these meds when given at the first signs of Alzheimer's. We have tried talking to my in-laws since they have issues but they will not budge on going. I suggested to a friend whose mom is having memory issues to try and take her. I don't know if they don't want to find out there may be a problem or they don't want to go to a clinic based in a hospital known for being a place for people with mental issues and addictions. Either way, it is better to go to get checked out no matter where the program is than to worry your family about your condition. If there are meds out there that help, take them and you can spend more quality time with your family.

Thinking About Future Work Possibilities.

As I continue to do the paperwork and contact the appropriate agencies for help, I am also looking at agencies that help find work. There are several. There are companies that hire people with disabilities; my list is for those looking for something else. I also think of an agency that interviews the person, their family and friends to see what he/she might be interested in doing on their own. I like that idea. This started me thinking, my husband would say 'look out' or 'I could smell that smoke', about possible types of jobs that could be considered a business that they could do, work from home or a family business. I understand they cannot make a lot of money due to SSI regulations so it would be part-time/on a small scale. These can also be done using a mentor. There are agencies that have folks who want to mentor a challenged child/adult or use a Best Buddies person. Here are some possibilities - just ideas I toss around in my head especially after I leave a place or talk to someone who owns a business: *bake cookies or cakes to sell to friends or family (this one came up during a seminar - someone's son was doing it and loved it); *walk a dog/take care of a pet for neighbors or family; *work with a local small business -- we go to a local car repair business, I think a small 'stand' could be set up selling coffee and snacks, on a Saturday for instance. After visiting mom at the nursing home and hospital, how about working with a local gift shop setting up a place on the weekends selling some items or take some items from the hospital gift shop around to some floors and help sell. The young businessman or woman keeps a percentage of what they sell. At nursing homes, they can sell on weekends or family nights; *collect scrap metal, cans and/or bottles and sell them. They would be helping the environment as well; *if they are artistic do some art work and place it in local businesses; **this one I had started trying to work out a plan to do for Will and maybe a few others in his group (or for his work group in school) but due to family illnesses and my work gearing up I did not get far. I still think it is viable. The idea came from my mother actually -- she was commenting on how she has a hard time getting to the cemetery to put flowers on family graves. So what about a business where people can go for them? They advertise in churches, funeral homes; they charge a straight fee to order either fresh or artificial flowers or a flag; who goes can clean the stone a bit and maybe say a prayer. Take a picture to show their client what it looks like.