Friday, March 27, 2009

looking in ~ Ciarra's life

I have had the opportunity several times this past week to see Ciarra more from the outside looking in. It has been a distinct pleasure.

Last night, I had to run her brother to the Docs, and left everyone eating supper. she was at her table in the living room. when I got home, she said the dog had eaten her supper and would I mind taking her to McDonalds? Now, Ciarra is a homebody. she likes to be here and rarely can be talked into going out. shes a tad (ok, a lot) spoiled in that she doesnt really often have wants that are unfullfilled, so it is hard to bribe her. She likes to be home, she likes to sit in her Library room and read, watch tv, color, etc. But she wanted McDonalds, and off we went. (I was thrilled she wanted to go!) I sat down, gave her the money, and let her order her meal. She did so, ver politely and carefully, cautiously enunciating every word. The lady at the counter was surely there just for us last night, I couldnt have asked for a kinder more tolerant person. She very politely took Ciarra's order and asked her questions, what grade, how old, etc. They had a very nice, normal conversation. another lady came over to give her her nuggets, and Ciarra engaged her as well. When she turned to walk to the table, I heard them say "OMG, isnt she the most adorable, polite kid EVER?" As a Mom, there are way worse things you can hear. I was proud of her, and every time something like this goes so smoothly, it gives me more faith in the future and her place in it. She will be ok, I think. As we were leaving, the lady asked me if she could give C a hot fudge sunday, and told me she thought Ciarra was beautiful and sweet. We enjoyed our meal together, talking and laughing, and I realized HOW big she is getting. I treasure these moments.

Then today I was at her school, and it was lunchtime, so I detoured to go say hi. I scoured the lunchroom, saw the aides that work in the life skills room, some of the kids, no Ciarra. she wasnt in the table I always see her at either. Then there she was, across the room, animatedly telling some story with 5-6 little girls listeningly intently, who all laughed when she was done talking. It was so normal it took my breath away. Little girls being little girls, but allowing her...special needs and not only be a part of their group, but a treasured part of their group. The friendships she has are so important to her, and so fullfilling to see. They saw me coming and were all smiles. One stood to give me a hug, I noticed how tall she was and she must have read my mind, she said "Im wearinf high heels!" I love that these precious little people have been in my life for so long and that they truly and genuinely like my daughter. The one big fear I have always had was that she would not have friends. Some days, I think she has more friends than I ever will. I love that little circle of preteen heads, gathered close, whispering and giggling. I love that she is a part of it, I love that it is happening naturally, and that it is genuine. Thank God for the innocense of children, they give me hope.

Thursday, March 26, 2009

Wednesday, March 25, 2009

a beautiful spirit-need your prayers

The song above is called Endlessslumber by Sam Chase. I heard this song a few years ago, through my daughter Kristin, who was friends with Sams sister and also with his little brother Leo. I spoke with Sam several times after, I had a feeling he was going to be somebody, he is a very talented young man. Kristin came home all excited last week because she had seen Leo, she really likes the kid.

Sam later joined with his friend Yuri to create a band that has an old sound, very reminiscient of Simon and Garfunkel.

Two Glenburn brothers were injured Sunday night when the driver lost control of his car about 6:30 p.m. as it was headed into Bangor on Broadway. A witness, who asked not to be identified, said the driver lost control just after the white station wagon passed under Interstate 95. It crossed the oncoming lanes, became airborne and struck the side of an empty two-story frame house next to the Irving Mainway. The car landed on its roof.

Sam and his little brother Leo were seriously injured in a car accident this week. I understand that an unknown medical condition caused the accident. Your prayers would be much appreciated for these two beautiful young men.

Tuesday, March 24, 2009

I'm Goin' Home

I needed to sort a few things out in my mind yesterday, and so I took a long drive. I never intended it to be quite so far, but before I knew it, my car was heading North up 95. I was going home, to the place I grew up.If I had planned this trip, I would have brought my camera, but I didnt, so the things I saw will have to remain in my minds eye, and maybe that is for the best.
when I was born, my mom was 17 years old. she was the youngest of 15 kids, dirt poor, and had never been raised with much of anything, especially love. Somehow, she managed to have a very strong maternal instinct, and an innate ability to survive. Although I would say they made a fair number of mistakes, I understand that they were SO young, and she came into it with so little preparation. One thing she always did was love us, even when her own internal battles raged and she was not the mom from Leave It To Beaver, in her way, she loved us better than many moms who are born with silver spoons in their mouths. But we were poor. I used to think she just didnt like to eat much, then I realised she was giving my brother and I the only food there was, many times. I am not sure how we made it, no car, little food, 2 babies being raised by a teen girl. She carried us to work with her, one on each hip, a year and eleven days apart, frostbite on her own legs, but us believing it was a fun adventure.
I drove into "The County" as we call it, Aroostook County, Maine. It is a 31/2 hr drive each way. Although I am firmly rooted here in my town and have lived here virtually all of my adult life, the call of "home" is strong. Driving past the potato fields, harvesters and diggers, Mount Katahdin, and the University Of Maine at Presque Isle was an awesome feeling. I was almost home, that other home of my childhood, the place where I came from, and I was determined to take the time to see the places I havent seen in 15-20 years.
I came over the hill into Caribou, the place of my birth, and felt a rush of emotion. No matter where I go, there will never be another feeling like the one I have driving through the places of my childhood. My Aunt Betty's house, a tiny little yellow bird of a place, it never changes, although no longer hers. There is still the huge propane tank in the yard, it looks like a submarine, and thats what we used it for as kids. My cousins Beth and Lisa and Barbara and their brothers Bobby and Duane would climb inside it, pretend it was a sub, and have great adventures. Driving by the house took barely 10 seconds, but in that flash of time I remembered Barbies tomboy ways, the little hideout under the house, Beth ann trying to fly off the neighbors roof with just an umbrella to break her fall. we really believed it would work, it did for mary poppins! I remembered my Uncle Phillip getting so drunk he passed out on the couch, and us kids broke out Bettys makeup kit, and painted every inch of his face in garish colors, did his toenails and fingernails, and tied little bows into his hair. He would wake up screaming mad, and then laugh and chase us out of the house. I remembered when we lived there, before my biological dad went to prison, before Betty moved in, sitting in the dark at the kitchen table, with my dad furiously mad and me quietly trying not to gag down the cold food I despised. And I remembered me and Duane as teens, sitting in his car, up on blocks, singing Leather & Lace by Stevie Nicks, the only thing that worked on that car was the radio, but I was about 13 and hero worshipped him. I will never forget that day, and the friendship we shared. It was only a few months later that I called his house after school and lisa answered, I asked for him, and she said he couldnt come to the phone just then. I heard it in her voice, something was wrong. I was sitting at dinner that night, my mom was at work, when my stepdad answered the phone. He took a message, then dialed my mother at the nursing home where she was working, to tell her that "your idiot nephew hung himself today". And I sat there, trying to swallow, my heart was racing, but I couldnt show emotion or he would turn on me. And i knew it was my Duane, and he had promised me he never would, and I had believed him. I remembered his funeral, and a neighbor trouble maker who pulled down his turtleneck, and showed everyone the marks on his neck. I remembered my Grandmother, who had been told a different story, and the shock and dismay on her face when she knew. And I remembered going there a year or so later, when Lisa gave birth to her first child, Nikki, standing over the crib in the newly remodeled house, admiring the baby, and then realizing with a chill that I was standing in the exact spot where his body had hung, and I looked up, and the patched hole was still there. I never went back there again.
I kept driving, and checked on a property we own up there, my bio dads old family home, a trailer on a little plot of land. It was snowed in, no footsteps, meaning no one had been there causing trouble. Nothing to see, snowbanks too high to get inside, and a sigh of relief. I hate dealing with that place, the anger and resentment are still too strong. deal with it in the springtime, when we can figure out what to do with it.
I drove on, and came to the little trailer park where we lived when I was small, in the days just before my dad went to prison (again). dell-wood trailer park. I drove in, not expecting to see anything familiar, but I had forgotten that trailer parks never age, and 3 doors down on the left, there it was. Maybe it is my mind playing tricks, but I dont think so. I remembered jumping off the porch and hitting my head on the rollout window, I remember that there was an awful secret propagated there...and I remembered the little boy named Richie Plante who lived across the way, who was my brothers best friend, and who had some kind of liver or kidney disease and needed a transplant. I drove around the road and out, back onto the highway. I wanted to visit the place I spent the happiest days of my childhood. Loring Air Force Base.
When my mom remarried, a guy named Ray adopted us. (I havent seen him in 20 years) I used to think he was just a jerk, he was way too strict, and had a mean streak. But he was a few years younger than even my mother, meaning when I was 7, he was barely 21. She was 24. hardly old enough to take care of themselves, let alone 2 little kids. But they did. It makes more sense now why they screwed up sometimes, but back then I just thought he was mean. But he was in the military, and he brought us out of poverty, and to this little piece of Heaven AF base. There were green lawns, a Rec center, pool, movie theatre, woods to climb in, lakes to fish in, sports teams, and a courtyard of friends to play with. I wanted to see those places again. I hadnt been on the base since I was about 17, 23 years ago. The base actually closed in the early 90s, but in my mind, it has always been the same, just with new occupants.
I drove past what used to be the main gate, where you had to show ID to get in, and it felt a little weird just driving in, I looked to see if there was anyone in the gatehouse, but it was empty. It was a very emotional thing for me, to go back there. But it was instinctual, too, although I had not had a license when I lived there, I had ridden my bike through all of the roads that werent heavily guarded. I knew it even now, and every road filled me with memories. But as I drove, I was disappointed. Damon elementary was gone, apparently torn down. I passed beaver Dam, where we crossed the little stream to get home every day, and I could almost hear us laughing. In my minds eye, i could see myself, too, running from a boy named paul on his motorcycle, chasing me with the promise of more touching that I didnt want. I shook the memory away and kept driving. I planned to go through the housing, but there was a huge snowbank in the way. My mom told me later last night that they tore all the old houses down. acres and acres of houses...what a shame.
I drove down the main drag, past the hospital which is now some kind of adminsitrative building. Past the Youth center where I spent many many hours playing. It was closed up, unpainted, the road into its driveway blocked by snow. The playground still stood, but you could see it hadnt known the laughter of children for a very long time. Part of the roof was caved in, and it made me cry. I was sad to see the places of my childhood so neglected and unloved. so many memories, baseball games, cars lined up for a mile, parents sharing laughs the same way we do now for ours. It was all gone.
I drive through the base, past the old theatre where i watched all the early Disney movies, eiding our bikes there every weekend to see what was playing and buy the jolly rancehrs candies we loved so much. I last went there when I was a teen with Jim and our friends Peter & Theresa to see Children of the Corn. I remember Jim and I snuck out early, it was pouring rain and pete came out to bring the car around. Jim and I were hiding in the backseat, when he got in I grabbed his shoulder and said in my scariest corn voise "He wants you too, malachi!" peter jumped. I laughed as I drove away, remembering that day and the fun we used to have there. Past the old pool, the heavy air and the smell of sweat from the locker rooms. I often dream about that place, and I wonder how we as kids were able to stay safe in a building chock full of young military men. Respect, trust, whatever...we were always safe there. Past the NCO club, where my mom won my hope chest at Bingo one night. To the flightline, and the hangars, where housands of us gathered to watch the air shows, the Thunderbirds roaring overhead, Blue Angels too. The low building where we climbed to watch the planes, sitting in the belly of a KC135, walking on the wings of the biggest military planes of the day. Running through the hangars, watching the younger guys salute my dad, sitting in the boom of a tanker, imagining what it was like to fly. The hangars were all chipped and rusty, doors closed. In my mind I could see the sharp military men and women, the pride in the upkeep, the gleaming windows and smartly painted doors. And I cried. It felt sad to be there, remembering the roar of the crowd, the decency and kindness of the people there. In my mind, I said goodbye to Ray, and I thanked him for giving us those years. He did the best he could.
I drove past base Ops, where I met Jim on a bus one day 25 years ago, Feb 25th, during the winterama, when boy and girl scouts gathered to spend the weekend in the snow. I had a group of little girls, I was a jr leader. he had a group of little boys, he was one of the older kids who helped with the troop. It was pouring rain, and I had just sent all my girls off for the day, they were too little to spend the night. I was waiting for my bus, when I heard one honk. I thought it was mine, but it was Jim. he had seen me standing there, and wanted me to look up. said he wanted to see my eyes again, he had seen me in the base Ops building. I had taken my glasses off because of the rain, and was half blind. I ran to the door, thinking it was my bus, and was too cool to let them think I made a mistake, plus he was sitting there so handsome, looking down at me with a shy smile. I climbed on board and found a seat in the back, asked if they would mind me catching a ride. It wasnt long before he was sitting beside me in the back seat, holding my hand. Memories....
I left the base, past the old restaurants, through the town we moved to when we moved off the base. Past my high school, my childhood best friends Lisas house. I couldnt believe it when her parents still lived there. Her mom came to the door, peeked through, hollered "Bernie, can you believe it, its Lisas friend Michelle!" MANy pounds heavier, many years older, but she knew it was me by my eyes, she said. she gave me Lisas new number, hugged me 50 times or so, and told me to keep in touch. I got the distinct feeling this was goodbye for real, and there were tears in my eyes when I said it.
Past Main street, which is mostly boarded up now, the little grocery store I worked at gone. Up my old street, past the twiins house where we climbed trees. past Cindys house, where we had parties we shouldnt have. Past my neighbors house, who hid the big black leather bar Ronnie and I bought my parents one Christmas (which is the one thing from my childhood i still have) and there it house. so much happened there, good and bad. Prom, divorce, abuse, love, sneaking pepsis from the fridge, latchkey kids who dared to tough dads stereo even though it was clearly against the rules. Listening to my parents friends, drunk and laughing, wishing I could be a part of the fun, wondering why they thought it was funny to sing into the vacuum hose? My mom kicking me out, and me getting arrested for kicking the door down and taking my stuff. Michael standing in the doorway, telling me Wnedy was pregnant and he was leaving for the Army. My parents sending me to bed, sitting Jim down to have "the talk". Ronnie going away to join the Air Force, Ray leaving, the little car he bought himself, that seemed like a slap in the face because we were eating with the help of food stamps. Science fairs and poetry contests, a little puppy named Charlie in the mailbox, Dutchess the lab who was our glue. Late nights, when 5 minutes late meant I was grounded, the little cubby closet in my room, papered with Shaun Cassidy and leif garrett posters, only big enough for me to squeeze into, to be alone and away fromt he noise. The house is much prettier now, fancier. It is the same house, but too different. Just memories, keep driving.
I drove into Jims hometown, two towns over from mine. Catholic, french-speaking people with strong values and work ethics. I didnt even drive through town, not past his families old house, not past the ancient trailer we lived in when kristin was born. straight to the nursing home, to see his mom. It has been over 5 years, and I am ashamed to admit that. she is in late stage Alzheimers, and I have been scared. I go to the door, and am asking the nurse at the desk if she can show me to her room, when another nurse walking towards me pushing a wheelcahir says "Oh, right here And I look down into the chair at this tiny woman with grey hair and a frozen smile, and it takes me a minute, and I am ashamed. I wheel her back into her room, pull up a chair, and hold her hand. I cant be sure she really knows it is me, but I think she does. I tell her all about the kids, and Jim, tell her how sorry I am, how beautiful she is...and she is....alzheimers can ravage the brain, but she still has the same eyes of the man I love, the same beautiful skin and small hands. I love this woman in a way I cant explain, and I need her to know that. I try not to cry, but I cant help it. The floodgates open, and I am telling her that I miss her, her cooking, her laughter, the way she held us all together as a family. I tell her that we dont lock kristin in the closet anymore (an inside joke) and I swear she smiles at that. she tries to whisper something, although I have been told she doesnt talk. I listen close, but I cant catch it, although I am sure the word love is in there. I squeeze her hand, now covered by my tears, and tell her I love her too. Her room is full of pictures and beautiful things, unlike that of her roomate, it is clear that she matters to people. I am sad for both of them, and as sad for her as the other, because caring for someone doesnt just mean sending photos at Christmas. It means sitting there, holding their hand, being there, even if there is only the slightest glimmer of recognition. For her, not for me. And I am sad that I have allowed fear and business to consume the years, that Jim has managed to get here half a dozen times without me. And I promise her I will be back, that it doesnt matter how far away we live, we want to see her. and I tell her her youngest baby is doing well, that Jim is successful and happy, mostly, and that we are ok. And I know the smile is there because she hears me. I kiss her forehead and tell her I have to go. and I take her to the lunchroom so she can be fed, and I hold her hand for a minute and contemplate the promise I just made, as I look around me and notice the elderly man holding the hand of the wife who seems not to even know he is there, telling her stories about their grandchildren, devotion. We make time for so many other things, we HAVE to make time for this woman we so love. I hate leaving her, and I cry all the way to the door, where a sweet elderly man tells me the combination to the door code, and I think with amusement about how he could escape, if he wanted to, but instead he makes it a point to be the one who is the gentleman, escorting guests out, showing them how to be free of the place that he may never leave. Life is ironic, isnt it? We hurry to grow up, then we want to revisit our childhoods. we think we want to get older, and then we look it in the eye with fear. I feel like I said goodbye to some things today, and maybe grew a little as a person in the meantime. I hope so anyway. It was a long drive home.

Thursday, March 19, 2009

not funny at all-Obama makes Special Olympics joke

President Obama sat down with Jay Leno on Thursday for a late-night TV interview that spanned a range of topics -- from the economic crisis to the presidential dog -- and even, at one point, featured the president joking that his bowling ability was suitable for the Special Olympics.

The bowling comment was a reminder of his poor performance on the lanes last year during one of his campaign stops. Obama bragged to "The Tonight Show" that he recently bowled 129 on the White House alley.

"It's like Special Olympics," he said.

how's that, Obama? It is like the SO in what way, exactly? The folks I know who bowl for SO could kick your liberal butt at it. Kinda like "retard" with a spin, I guess? If you suck at sports, you must be "in the Special Olympics"....only....the Special Olympians are better than you by far. and Im guessing most of them have more class, too. wonder how Tim Shriver likes your idiotic "joke"?

Wednesday, March 18, 2009

Monday, March 16, 2009

Communicating Partners- a review

Play To Talk: A Practical Guide to Help Your Late-Talking Child Join the Conversation. Book Review by Michelle Harmon. E-mail: Copyright © 2008 Michelle Harmon. All rights reserved. Reprinted with the permission of the author.

Dr. James MacDonald has worked tirelessly for many years teaching parents to be their children's most effective communication partners and has trained over 1500 therapists and teachers to work with language delayed children. "Dr. Jim" was a professor of Speech and Language pathology and Developmental disabilities at the Ohio State University from 1971 -1995. He directed the Parent Child Communication Clinic at the Nisonger Center during those years. In 1995, he took early retirement to devote his time to building parent-based programs and to direct the Communicating Partners Center.

Communicating Partners (CP) has provided information and hope to families and the children they love for many years. With the release of his latest book Play To Talk: A Practical Guide to Help Your Late-Talking Child Join the Conversation (Perfect Paperback), Dr. Jim has brought his strategies and practical ideas to life in an easy-to-read, practical guide format.

The book uses real-life stories and lots of photographs to teach the methods he espouses, and that have worked so well for the families he has devoted his life to helping.

The book is both a Home Coaching Model, rife with day to day suggestions and ideas to make communication with children playful and interactive, and a Professional Model, a clinically-proven model for Speech and Language therapy that has been tested for over 30 years.

CP meets the needs of parents and professionals alike, because it is child-focused and responsive to the child's strengths and innate abilities. Rather than focusing on a lack of speech, the program reminds its users to focus on what the child can do, and to meet them at their level through play and gentle interaction. This approach allows "Speech Therapy" to occur even with the youngest of infants, as it builds on sounds and behaviors all children make, with turn-taking, imitation, and humor.

All children have stages of Communicative Development, but without practice and a clear understanding of the role a partner in that communication plays, they can get "stuck" at certain intervals and stop trying to communicate. What adults can do to create communicative children is:

-Increase the child's social interactions by using any behaviors the child can already do.

-Help the child learn social play, turn-taking, imitating and vocalizing. As these skills grow, CP urges more intentional, focused communication, with an early emphasis on non-verbal communication prior to words. With the groundwork laid, a Communicating Partner moves on to

-Help the child use language for a variety of reasons, especially social reasons.

-Refine conversations skills.

-Help the child learn how to be social and communicative in civil, empathetic and socially productive ways.

The second chapter of this amazing book deals with the real reasons why CP is so effective. It clearly shows the different ways children and adults see their world, and how to bridge the gap between them by teaching the adult how to enter the child's world. Children live mainly in a world of sensation and action. Adults live mainly in a world of thought and language. "When adults only talk with children they often miss the child's world of experiences and fail to connect. The more connections you share, the more development happens." Those connections are generally through play and imitation, rather than through words. The book gives terrific ideas of how exactly to enter a child's world and how to be balanced, responsive, playful and affirming.

One of the key differences in the CP method versus that of other Speech Therapy methods is Balance. Rather than see the adult as the provider and the child as the consumer, the program addresses the need for "balanced communication".

Understanding Balance
"In many years of research and clinical practice, we have found that a majority of interactions with children with developmental delays are out of balance. Partners often dominate the child with talk and action, often unwittingly forcing the child into a passive role. He listens and watches more than he communicates or acts. ....Balance is a strategy that parents can use to help the child play a more active role in interactions. When partners learn to allow the child time to do or say what he can, they often discover that he can do much more than they realized."

Another vital point CP makes is that an adult must be responsive to the needs of the child.

"A common concern with children is that they often make more sounds when they are alone than when they are with people. They seem to not have learned that sounds can be powerful ways to communicate. When parents begin responding to a child's sounds, even unclear ones or just playful ones, the child learns that sounds are for communicating: a critical step toward talking. Your child can begin to communicate with absolutely any physical or vocal behavior that you respond to regularly. If you sensitively respond to a behavior as if it were a meaningful communication, it will become a meaningful communication over time."

Play to Talk teaches the important skill of matching.

"Matching is about being 'developmentally possible' for your child. Matching involves doing actions your child can do and using sounds and words you child can say. To help your child learn new actions, sounds and words, try 'progressive matching'— do what he is doing or make sounds like the ones he is making then show a next possible step. Add another step or a new idea to an action sequence. Expand language in small steps by translating sounds into words or by expanding a one-word statement into two words. Add to whatever your child is currently doing in order to help him take a next step."

With the methods explained in language that makes perfect sense, the book moves on to creating a practice plan. The chapter provides step-by-step guidance for creating a practice plan, a straightforward, written plan of action that details how and when partners will practice the responsive strategies with a child. The chapter helps a parent evaluate where a child currently is and what the immediate and long-term goals will be. It evaluates the parent, the child, even the environment, with questions meant to really delve into a plan of action. Examples of plans are given, and Dr. Jim gives advice on how to record progress.

Chapter 4 explores the nitty gritty, how to create activities and possibilities to practice the CP methods you have learned about. It explains People Play, and the necessity of teaching a child to enjoy playing with people rather than objects early on. It uses the obvious infancy games of peek-a-boo, tickling, etc to learn turn-taking and interaction with people for fun. But CP reminds its users that the games are done with the intention of fostering communication and give-and-take that is so vital to speech later on.

In Chapter 5, clear examples of how to make CP work in daily life are given, as well as insights into things that can affect communication negatively, such as sensory issues and behaviors. CP focuses on natural partner responses as the primary reward or reinforcer. The key to natural reinforcement is to continue to do socially whatever keeps the child interacting in desirable ways. Dr. Jim offers insight into possible causes of problem behaviors, and really explains why a depressed, bored, or over-stimulated child will act out. He gives great suggestions for reconnecting with the child and returning to a good balanced relationship.

The book goes on to discuss daily activities that promote communication and speech, and how learning to be a communicator has profound effects on the entire life of the child and the family.

As a long-time user of CP and a mother of a child with Down syndrome, I can personally attest to the methods and theories Dr. Jim espouses. When my daughter was 2 years old, I found his program. From that day forward, I began to change how I interacted with her, and learned to be a much better communicating partner for her so she could be one for me, and she has blossomed into a child who is quite capable of holding her own in a conversation. I especially like that Dr. Jim recognizes the power of parents in their children's lives, it is a position far more powerful and capable than that of any speech and language professional. His methods of mutual respect, humor, and kindness really work. I like to say that what we are looking for is not really "Speech", it is communication, and there really is a difference. Communicating Partners gets that, and this new book brings real life context to the ideas, and makes them easy to understand and pursue. I would recommend this book, and Communicating Partners in general to any parent of a child with Down syndrome, from infancy to adulthood, who worries that their child will not be able to communicate their wants and needs to them. Not all children will have a full language, but with Dr. Jim's suggestions, virtually all of them will be able to communicate their wants and needs well and to be able to feel heard by the people who love them. I highly recommend this book.

Friday, March 13, 2009

a discussion on waivers, medicaid eligibility, etc for kids with DS




Home and Community Based Waiver Services for Persons with Mental Retardation (HCBW)
This is a federally approved alternative to ICF-MR services. It is intended to reduce the reliance on institutional care in Maine. It offers a wide array of services that allow each person's unique needs to be planned for and addressed in a community setting. BDS determines eligibility for this benefit. The most commonly used services in the waiver program are:

Residential Training services: Offered only in a DHS licensed home, this service provides training and support in areas such as activities of daily living, social and adaptive skills, and community inclusion.

Personal Support Services:Services offer assistance and support in independent living. Also these services help the individual cope with the demands at home and in the community.

Day Habilitation Services: These types of services focus on health and social services such as behavior management, skills development, and physical development.

Supported Employment: This service provides ongoing support to those who need it in order to perform in a work setting at the prevailing wage.

Other Waiver Services: The following are additional services available through the Waiver: respite care, environmental modification, communication assessment, crisis intervention, and consultative services. (These services have limited availability or specific criteria for eligibility.)


Waiver programs are so-called because they involve the 'waiving' of some statutory rule(s) of Medicaid such as the requirement that all eligible persons within a state be offered the same services. States apply to the Center for Medicare and Medicaid Services (CMS) for waiver approval. Medicaid waivers can be tailored by states to meet their local needs and so may have specific eligibility criteria applied (e.g. serving a particular population group or area). States can limit the number of people served on waiver programs by specifying a certain number of 'slots'. The waivers have limited time duration and states are required to apply for extensions if necessary.

Types of Medicaid WaiversQuote:
Two Medicaid waivers frequently used by states are 1915(b) and 1915(c) waivers (referring to different sections of the Social Security Act). 1915(b) waivers provide managed care services to Medicaid populations and 1915(c) waivers enable states to provide HCBS to people who would otherwise be institutionalized. There are different sub-groups of these waivers, for example 1915(c) 'model' waivers are intended to allow states to test new HCBS and have an upper limit of 200 slots. Programs authorized under Section 1115 of the Social Security Act allow experiments, pilot or demonstration projects that promote the objectives of the Medicaid policy1.




the following is copied from an old post...years old, most of the info still pertains, but please check with your local agencies:

you may be applying for the MR Medicaid Waiver. This is a funding stream for a lifetime of adult services, so you have to be able to show "a continuing need." It is important to stress that your child may never be able to live completely on his own and would always need support.

When applying for adult benefits, it is not time to "show off" what a person can do. It is time to show in detail the "level of support" a person needs. I know it is very hard to do when you are still in a "school mindset," but it is necessary.

For example - If he can't be left alone at home on his own, then he does need continuous daily supervision.

Does he Cook? - Well this really means can he cook what he wants, when he wants, using anythng in the kitchen on his own. So in terms of supervision, he probably does not cook.... or within very limited and defined means.

- Microwave only,
- Microwave and stove top only,
- Microwave, stove top and oven

- Any time on his own
- Any time an adult is in the house
- Only if an adult is in the kitchen
- Only if an adult is one-on-one with him

When I give parents an example of what to think of, I say to imagine their child was placed in a brand new apartment or even house on his own, but knowing there was say a two-way mirror or something so he would be in no imminent danger, but no one would be there to assist him directly on anything or even monitor him. Then from the time he got up until the time he went to bed,what could he do - AND HOW WELL COULD HE DO IT?

The Mental Retardation Medicaid Waiver in Virginia can be applied for at any time, and here it done through the Regional Community Services Board or the MR/MI agency. To actually get a waiver slot, one does have to be eligible, if not using, Medicaid Health Insurance. I advise applying for this ASAP as there are usually very long waiting lists.

If one applies and recieves SSI for even one month, then you can request the short two-page form for your teen from the local Dept. of Social Services and it is a pretty routine process.

Any person with DS can apply at any time for a Mental Retardation Waiver funding stream. For example ^&*() several months ago got it for her out in Iowa as there was no waiting list in her area and maybe in the state. %^&*( is a middle school student, and her Mom is using it for respite and some community based outings. The great thing is that once accessed the funding will be there later on for day activity programs if one is not able to work, for in-home services, respite and residential placement, too.

Again, it is good to get on any official list as soon as possible. One needs to see how a state uses a Waiting List. Some may base openings on length of time on a waiting list, while others may strictly base it on necessity or urgent need.
And, you just never know when a legislature might allocate more money so that there might be several openings at one time, and you would hate to not have a child or adult on the list. I mean it could be that a young child with a family in crisis who might be at-risk of immediate institutionalization might be given a waiver if the need was judged to be the most acute.

Once approved through a verbal Level of Functioning Test/Inventory, then ask about criteria to get on the Emergency or Urgent Waiting List. Let your Case Manager know of any factors which might raise your chance of getting bumped up the list. (parents age, health, emotional issues) I hate to say it because right now in so many states an MR Waiver is "crisis driven," it is not really something you wish to get, although you really need it for adult services.

1- Supplemental Security Income - SSI which is the cash benefit which at age 18 a teen can apply for as a "family of one." Currently a full payment is $658 a month. *Call Social Security Administration 800 line or the local area office for information and a form. Also look online for great information.

2- Medicaid Health Insurance - Again at age 18 can be applied for by a teen at age 18 as a "family of one." You want to establish the eligibility because you need this eligibility if you want to qualify and get a waiver. You could also use it as a secondary insurance if your teen can be on your family policy. Or you can use it as the teen health insurance policy. *Call your local Department of Social Services for a form. Again, if the teen can get SSI for even one month,you can use the much shorter two-page form.

3- Waivers - Each state has different kinds of waivers - which in the case of the Mental Retardation Medicaid Waiver means that it provides funding for services to keep one at risk or institutionalization in the community. Don't get too upset because the criteria for "institutionalization" are not all that severe overall. There are other kinds of waivers for different disabilities including perhaps for those with mental illness, those needing assistive technology etc.

a- Usually it is the Mental Health Agency that one contacts about whether there is an MR Waiver in your state. Again you can apply for it at any age.

b- Usually, there are waiting lists whether at the state level or at the community level because of limited funding for slots. Again, you need to see if your state maintains just one huge state list or how it is devided by regions or communities. Then contact where you fall for more details. And then see how the waiting list is done - is it length of time on the list - if so, get on it at birth. Usually, however, it is based upon emergency need criteria, which in many cases means aging out parents or a "family crisis" of one sort or another.

c- First off, find out the process to qualify and do so for a child, teen or adult.

d- Second of all, find out how to get on the Emergency Waiting List - if you meet any of the criteria because this is usually where all placements are made from.

e- Do check out all criteria for receiving an MR Waiver now or in the future in terms of income, resources, working and earnings just to know.

Everyone with a child with Down syndrome needs to:

1- Find out what Waiver programs exist in their state.

2- Is there a statewide waiting list or a more regional one? Then is there just one big list or an Emergency or Urgent Need sublist and what are the criteria to be placed on that?

3- Find out how placement are made - ie. from length of time on the waiting list or based upon the need of the family/applicant's situation. This will give you an idea if applying early is of necessity or not.

4- ALWAYS ACCEPT A MEDICAID WAIVER SLOT because as long as you use one service with a certain time period of being offered, your son or daughter will be able to access the range of services offered in your state.

5- Note a Medicaid Waiver slot is not portable from one state to another. Now the individual may be placed at the top of a list if really needy, but he/she may need to begin the process all over in another state.

6- Medicaid Health Insurance does not change from state to state. However, the services offered in each state will vary.

***And don't think that any discussion of cuts in Medicaid may not well impact just how much state funds there are for Medicaid Waiver slots. A Waiver is a federal/state match of funds.

Each state has different waiver programs, which means the program waives the normal requirements and expense limitations on Medicaid funds to allow for use by the disabled. So if you wouldn't normally qualify for Medicaid because of your income, that is waived because you or a family member has a disability. However, its complicated - each state has different waiver programs, and each program may have different eligibility requirements for either need or income.

The link I posted at the top is where you can find all the waiver programs for any state

And yes, if you're already on regular Medicaid, a waiver might pay for additional services or equipment, so it's worth applying for. The best policy is to always apply - if you aren't eligibile, then you'll know, and if you are, then you'll get the benefits or get on the waiting list. Generally, a waiting list is just that - you get nothing until your number comes up, and then you get everything. At least that's how it works in my state.

In Virginia, the Developmental Disabilities Medicaid Waiver does not cover individuals with Mental Retardation because there was the Mental Retardation Medicaid Waiver in place. The DD Waiver in Virginia does not provide funding for residential programs so this is one key difference.

In Virginia, the DD Waiver provides services for those with cerebral palsy, autism, and other developmental disabilities which result in cognitive delay and other limitations.
The MR waiver is often thought of as a "ticket" because services such as respite and community supports are not tied to family income as so many other supports for special needs kids are. Once you are on the MR waiver it makes the whole path for services and medicaid so much easier .


This can be a very confusing topic because you are actually seeking information on a few things:

1- Who in your state can qualify for Medicaid Health Insurance birth to 18/19 as a child? There is an income or means test.

2- Who in your state can qualify for a Mental Retardation Waiver? There is a level of functioning test.

3- When can one apply for a Mental Retardation Waiver slot, especially if there is a Waiting List?

4- What are the criteria to be placed on the Emergency or Urgent Care Waiting List? (This is the list to be served first if there is a Waiting List.)



there are tricks and secrets to getting Social Security, one is knowing the laws


disability secrets/

Monday, March 09, 2009

I am SUCH a dog lover...forgive me

but THAT is some funny doodoo.

advocacy alert-write to the editor get this removed

People with Down syndrome in blue collar job

People with Down syndrome in blue collar job

Posted by seodowns 4 hours ago ( View profile
Category: World & Business | Tags: beat down syndrome treatment for down syndrome cures for down syndrome defeat down syndrome

An ugly face, disability in self caring, low IQ and a many similar characteristics are normal identities of Down syndrome. Though, the person suffering from Down syndrome is not self responsible for the disease but still bears the tag of mental retarded personality. Being the victim of 21st chromosome or Down syndrome is like stigma in the society. So, the premier online website has taken a wise initiative and launched its all new e-guide for the friends and family of Down syndrome victims.

It is an ultimate fact that there are no absolute cures for Down syndrome but we can minimize its ultimate impact on our day-to-day life. This guide helps in removing the stigma of parasite for all Down syndrome victims. One must understand that even Down syndrome victims are normal person as we are. There are laws in almost every country for the ensuring proper growth and career prospect of Down syndrome victims. For instance, one can check out section 504 of The Rehabilitation Act of 1973, The Education for All Handicapped Children Act of 1975, and the Americans with Disabilities Act of 1991. Even, the federal laws were passed to ensure adequate protection for the people with Down syndrome. stringer is the Editor for this Business page. Contact her and let her know what we think of this disgusting "journalism". I have yet to see an UGLY child, DS or not. And neither Ciarra nor I nor any other person I have ever met with Ds is a VICTIM. Go on, take a stand. send her a picture of your ugly kid.

Thursday, March 05, 2009

Nathan Vredevelt died today.

“Hi guys, I’m home! Jesus is awesome! I’ll see you when you get here!!” Love Nathan

Nathan Charles Vredevelt experienced heaven this afternoon. A memorial service will be held Tuesday, March 10 at 7:00pm at East Hill Church, 701 N. Main, Gresham, Oregon. The community is welcome to attend.

The funeral service will be private.

John Vredevelt (aka Dad) is pastor of RADIANT – A Jesus Church. RADIANT is a non-denominational church that will hold its inaugural service on Sunday, March 8th at 10:30am. At this time, John and Pam (aka mom) are scheduled to speak. RADIANT meets in the gym of Portland Adventist Elementary School at 3990 NW 1st Street, Gresham, Oregon. The church’s website is

tragedy in the little world of Down syndrome-Angel Behind the Rocking Chair

when Ciarra was born, someone very dear to me sent me a copy of the book Angel Behind the Rocking Chair, by Pam Vredevelt. It was the first book I had ever read about DS, and it touched my heart. It was about a little boy named Nathan, who has DS, and the ways he taught them to be closer to God.
Chapter 10 was called "Wanderings" and for any parent of a child with DS who has been labeled an "escape artist" you will know what that chapter is about. In this story, it was about Nathan's constant wandering, and his family's battle to keep him safe. The broader story was about how we all wander from God sometimes. The chapter detailed some humorous, but scary times that nathan wandered off. To a neighbors house, to the snowy front yard, to anywhere his tiny feet could carry him in search of adventure.

Fast forward ten years. Nathan is now a teen, and he loves the Portland Trail Blazers. He is at the Rose Garden with family and friends, and Nathan the wanderer finds a bathroom door locked, and goes looking for another one. somehow, he gets turned around, and ends up outside. For reasons no one will ever know, he tries to cross Interstate 5. This time, there is no one to catch him before danger strikes. Hit by one car, he is hurled headfirst into another. Critically injured. His family, looking for him, hears wors that a young teen has been struck by a car on the highway. With sinking hearts, they know it must be their Nathan.

Nathan Vredevelt is in critical condition at Legacy Emanuel Hospital & Health Center. His injuries are extensive, including fractures and massive head trauma. His family is with him. His sister Jessie writes:

Nathan Vredevelt is 16 years old and loved by so many.

Sunday night March 1, 2009, Nathan was struck by a car in Portland, Oregon. Nathan is in critical condition. He sustained broken thighs, pelvis and a head trauma. We are in the waiting game now; waiting for the swelling of his brain to go down before the Doctors can estimate how extensive his injuries are. He's being well cared for by the staff at Emmaunel Hospital and by his family.

We ask that everyone please continue to pray for Nathan and for our family as we navigate this difficult time. For the time being, the hospital is limiting Nathan's visitors to immediate family only.

We set up this site to pass on updates from our family and as a place for people to share their love for Nathan. We look forward to the encouragement we will get from your stories and memories with Nathan. We feel your prayers, your support is overwhelmingly beautiful. Jesus is Lord and he is cradeling Nathan as the Doctors keep him comfortable. God is good and the best is yet to come.

**Update Tuesday, March 3rd 11:26 am

Mom and Dad went home last night and finally got some sleep. Ben, David Dempsy, and Alex Lesser stayed with Nathan through the night, playing the guitar and singing worship songs, I know in my spirit that Nathan was participating in his spirit. I came in to be with Nathan this am at 9 and the boys went to bed. Nathan's wonderful nurse Noel updated me that the pressure in Nathan’s brain had increased from a stable pt.5 to the 30's this am at around 6. They scheduled him for CAT scan later today. They are preparing to take him down now as I am typing this. Good news is that around 10:30 am Nathans cranial pressure went back down to pt.6 this is stable and our nurse is happy with where it is at.

The night of Nathan's accident they took Nathan in for neurosurgery and preformed a crainioctomy (spelling?) They removed a portion of his skull on the right side of his head to relive the intense pressure from the impact. Nathan was under the care of one of the best neurosurgeons in the Portland area, Dr. Jeff Chen. His quiet demeanor put us all at peace, even as he was very straight forward about how bad Nathan's condition was. Mom asserted to Dr. Chen that she was getting the feeling that he wasn't hopeful, Dr. Chen said that the procedure went without a flaw but the extent of the brain injury is probably sever and that he, indeed, wasn't hopeful.

We are praying that God will free Nathan, whether that means complete healing and restoration, or, heaven. I can honestly say we all, Mom Dad Ben and I, have total peace. If Nathan goes to be with the Lord we are all jealous. Dad was saying how Nathan will be a choir director in Heaven... He'll be rocking out with Jesus all day long and he'll be able to sing on tune!

I will update with results from the CAT scan. Thank you for your prayers, we feel them, we are being carried by God's love and I can feel Jesus cradling Nathan. We love you all. Jessie

Nathan's story has inspired so many people, he was a very real person even though we never met him. My heart goes out to his family. I hope that you will send prayers for him, too. Having watched our friend's son Nicholas make a miraculous recovery from a very similar accident (right down to the broken femur) we know that God hears our prayers. Join me in making them extra loud and insistent?

Monday, March 02, 2009


catching up here:

I and the kids had a nasty virus/cold thing for a few weeks, it kicked our butts. Coincidentally, my computer ALSO caught a bug, it was really imeding my writing abilities, dropping letters etc, it was driving me nutty frankly. Thankfully, we are all better now. So some "ketchup":

Valentines was nice, Jim brought all of us gifts, which was very sweet. Ciarra is such a daddy's girl.

Jesse is on the allstars basketball team. He is not as strong in basketball as in football, but I was very proud of him for trying out this year. He has refused to for years because he knows he won't be "the best", and he is very self conscious of himself when it comes to sports. He is a very good football player. The experience he is gaining on this team has been wonderful. His coach does an amazing job of playing all the kids, even the less capable ones. Jesse is very good at defense, he is a mean rebounder, but not as great at offense. He has had some good plays and some not so good. Regardless, his team won the tournament this weekend! I was excited for them. He is #31.

A friend of ours young son was involved in a terrible car accident. His name is Nick. He suffered massive head injuries and other broken bones. 6 weeks after the accident, Nick left the hospital. The kid who wasnt supposed to make it did, and he is thriving. He still has some effects of traumatic brain injury, but he is a walking talking miracle. we are SO profoundly grateful he was spared. he has a wonderful community and a terrific family, SO many prayers went up. Thank God for the biggest favors.

another little friend was not so lucky. Our little buddy Joshua died this week. Joshie was 15, he had hypoplastic left heart syndrome, and he was never supposed to survive infancy. Joshs big dark eyelashes and beautiful smile will remain with us forever. His funeral is tonight, althought we are getting walloped with snow and may not make it over. Watching two young boys go through so much makes us treasure every minute with our own children. There is a commercial that says "Life happens fast"...that is so true. Hug your kids today.