December 2, 2013
Services for Individuals with Autism
This last few weeks have entailed more excitement than usually transpires in a year around here, and I have much to tell all of you. I’ve already shared the fabulousness that is my eldest child in regards to his hospital stay and our trip to Disney, but I would be remiss if I didn’t share my newfound knowledge as well. I had the good fortune to attend Autism New Jersey’s annual conference recently, and managed to participate in three workshops which were informative (and even entertaining) during the course of the day.
One related to residential placements which is a post for another day. The last two I attended were entitled “Navigating Services”, and pertained to discussions regarding the New Jersey Department of Children and Families, the New Jersey Division of Developmental Disabilities, Medicaid, and SSI, among a myriad of other topics.
I consider myself pretty well informed on the above issues as I am frankly terrified of missing something that would be to Justin’s detriment (I’ve found a heightened state of anxiety makes me more meticulous when conquering paperwork), but I learned a lot during the sessions, and would like to share my knowledge with all of you here.
The presenters were S. Paul Prior, Esq. and Maria Fischer, Esq. of Hinkle, Fingles and Prior, P.C. They were extremely knowledgeable in their presentation (which at times was hilarious even though they are lawyers), and I thought some of their facts would be helpful to all of you. It’s a lot of information, and they shared even more information with us than I will include here. The facts below were in my opinion the most important pieces of information, and a good place to start with educating yourselves. I’ll present them in bullet form (that’s how I retain anything these days). I hope this information will be helpful to all of you!
· Before 1/1/13 the DDD (Division of Developmental Disabilities) provided services birth to death for individuals with autism or other developmental disorders- now the Division of Children and Families (DCF) provides these services for individuals up to the age of 21
· EXTREMELY IMPORTANT- Any individual born after 1/1/97 MUST reapply to the DDD when he or she is 18 years old, even if they’ve registered with the DDD in the past (this is the big “secret” nobody seems to know about)
· To qualify for DDD or DCF services the individual must exhibit functional limitations in three out of seven areas of “major life activity”:
-self-care -receptive/expressive language -learning -mobility -self-direction
-capacity for independent living -economic self-sufficiency
· Children found eligible for services by the DDD prior to 1/1/13 DO NOT have to apply to DCF
· When applying for any services you will have to fill out an adaptive behavior summary form. It is imperative when filling this out that you answer the questions as if you comparing your child to a neurotypical child. THIS IS NOT THE TIME TO DISCUSS YOUR CHILD’S PROGRESS OR ACCOMPLISMENTS
· Some of the services DCF can provide include respite care, behavioral supports, residential placements, and in-home support
· At 21 your child will receive services through the DDD as long as the individual is eligible for Medicaid. At age 21 or 22 your child’s educational services will cease. This is where the DDD can provide both day programs and residential services. Individuals can be placed on the Community Care Waiver (CCW) waiting list for residential services if parents are both 55 and older; the person caring for the individual with a disability is no longer willing or able to care for the individual; there is a risk of abuse or neglect; one parent has a chronic condition and can no longer care for the individual; the person’s safety is at risk due to behavioral or physical needs. Unfortunately, the wait for residential services can be from 10 to 12 years after eligibility is established
· At 18 SSI (Supplemental Security Income) kicks in. The individual with a disability may not have more than $2,000 in assets at any time, or make more than $741 per month. FAILURE TO HEED THESE RULES WILL RESULT IN FORFEITING SSI FUNDS
· Applying for SSI automatically gets you Medicaid
· IMPORTANT- MAKE SURE NO FUNDS ARE IN THE CHILD’S NAME. If your child inherits anything from you or a grandparent he or she will be rendered Medicaid ineligible
· SPEND THE MONEY MONTHLY on food, clothing and shelter. It is supposed to be spent on the individual, and remember, he or she cannot have more than $2,000 in assets in their name at any time
May 29, 2012
Camps/Resources for Children with Autism
It’s almost summertime, a season which conjures up for me a childhood including vast swatches of unfettered time, staying out late, and one or two bad sunburns which I would always deeply regret attaining. Summer was clearly my unabashed favorite, filled with months of limited responsibilities, freedom, and the luxury of sleeping in without the clarion call of an alarm clock reminding me I had a bus to catch.
Clearly, all of this transpired before I had children.
While summer is still my “Cinderella at the ball”, I now have two little kids to care for during the course of its eleven week stay, and with my particular children, those long days can be challenging. While my boys are wonderful (I have to do a bit of mom bragging here), their particular brand of autism includes a great deal of impulsivity, which has made it difficult for me or any other adult to take them out of the house simultaneously.
My goal (at least for a few more years) is never to have to make the “Sophie’s Choice” of deciding whether to address my eldest’s son’s strong desire to leave a venue in under an hour, or choose to rein in my youngest from whatever event or fun-looking toy might be within his reach. I plan on putting two healthy, and hopefully exhausted, little boys to bed every single night of their childhoods.
I still have goals.
My eldest son is fortunate enough to have an eight-week stretch of summer school included in his IEP, and I know how incredibly lucky that makes both me as a parent, and him as a student. Those extra two months of academics and behavioral routines truly help prevent him from regressing during those hot months, a fact for which I am very grateful. While his program does span most of the summer, we always end up having two or three weeks to fill.
Given that Justin generally doesn’t like to remain anywhere longer than the amount of time it takes to watch a sit-com without commercials, filling that void for him has been a challenge. I’ve found over trial and error that he actually prefers to attend a summer camp rather than hang out with his mother all day (he is nine after all). I’ve been fortunate in that I’ve not only found a few that fit his needs, I’ve also located several resources that have assisted us not only in locating those programs, but have provided a stipend as well.
Trust me, many camps for autistic children don’t come cheap.
I can unequivocally recommend two camps in particular, one designed for neurotypical children but who also accepted my boys as participants, and one created to specifically cater to children with disabilities. The first is Olde Riverside School and Day Camp, located on Herbertsville Road in Brick, NJ. Both of my children have attended this program with their “shadows” (helpers our family has paid to accompany them), and had a wonderful experience.
Olde Riverside’s program harkens back to a simpler time- there aren’t any frills to speak of, just good old-fashioned fun. One of the biggest perks of this camp is their swimming program, complete with certified lifeguard/instructors who teach the children their strokes and water safety on a daily basis. Zachary, my youngest, made great strides in their pool (he liked to make the pretty lifeguards proud of him), and I truly saw his confidence as a swimmer grow by leaps and bounds.
While not a huge fan of the swimming program, my eldest child did enter the water every day and enjoyed the routine of camp, where the activities ranged from crafts to read-aloud, and games that changed about every half-hour. Due to his autism diagnosis he was also required to attend with his shadow, and for five summers he truly enjoyed being a camper.
My boy doesn’t like a lot of things, so this is truly a compliment to the staff.
The second camp I can wholeheartedly recommend is Camp Bridge, located in Wall Township on Herbertsville Road, and housed at the Camp Zehnder YMCA. Camp Bridge is specifically geared toward children with disabilities, and has successfully entertained kids with ADHD and ASD (autism spectrum disorders) for many summers. The camp runs from 8:30 to 3:00 which is convenient to parents, and includes a multitude of different activities to draw in the children. Since it’s located at Camp Zehnder Justin also had access to their pool, a welcome diversion for him during those hot days.
The camp’s owners, Bethanie Raichle (a Board Certified Behavior Analyst who works for several local school districts in Monmouth and Ocean counties), and Cyndee Policastro-Smith (a teacher for Toms River School’s autism program) provide a number of activities for the campers. These range from “morning circle” (which helps maintain the school routine) to arts and crafts, plus one field trip per week.
Another bonus is that I felt Justin required a one-on-one aide to participate, and Camp Bridge was able to supply that individual for me, with an extra fee. My eldest has attended the camp for two summers, and will be happily returning this year for a third. Bethanie and Cyndee truly “get” children with autism, and I always felt as if I was leaving Justin in safe and competent hands.
Of course, camps cost money (what doesn’t), and to that end I have found the DDD (Division of Developmental Disabilities) to be a great resource. A month or two after we relocated to New Jersey when Justin was two I applied to this organization for respite care, and eventually I was granted twenty hours a month. Our provider under this agency is the ARC, and through the assistance of my case manager we have had several wonderful individuals over the years who have truly bonded with my boys (some we’ve found on our own, some were suggested to us through the ARC).
There are several programs for respite under the DDD, and the one we’ve chosen pays our helpers directly. In this way we were able to use our monthly hours to send our helpers to camp with the boys to act as their shadows, which really helped offset the cost.
Another way to underwrite the tuition for camp is to contact the DDD directly, and ask for a list of camps that are “DDD-approved” (this is of course only applicable to families who have applied and have already been accepted for services by the agency). I’m told that every year the list of accepted camps continues to grow.
Finally, when my son’s horse-back riding camp had to close due to financial restraints, I wanted to make sure I left no stone overturned in procuring a new location for him. I contacted the Family Support Center of New Jersey (located in Manasquan), and spent about fifteen minutes on the phone with a wonderful employee who conducted a comprehensive search of therapeutic horse-back riding sites in Monmouth and Ocean Counties. She came up with about a half dozen options, one of which will end up hosting Justin this summer. We’ve been out to see it, and although I can’t recommend it because he has not yet attended, the facilities look beautiful, and the instructors could not have been more welcoming.
I see a post “part two” in my future.
I’ll list phone numbers and websites below, and I hope this piece will be informative to any readers with autistic children, or children with other disabilities who reside in central Jersey. Most of this information I happened to stumble upon from other parents who wanted to share their knowledge, and I feel compelled to pass on these opportunities to others. I’ve felt so fortunate in the connections I’ve been able to make for my children, in knowing that the memories they’ve formed from these experiences will reside with them for a lifetime. I wish you best of luck in that endeavor as well.
Here’s to a great summer.
Department of Human Services/Division of Developmental Disabilities
(732) 863-4500 or (609) 588-2727
Camp Bridge
(732) 580-6212
Old Riverside
(732) 458-1135
Family Support Center of New Jersey
(732) 528-8080
March 5, 2012
Robin Sims Trailblazer Award
(Billy and Bobbie Gallagher)
Music from “The Godfather” serenaded us as me and my husband secured our seats, wending our way through brightly decorated tables which were filled by the attendees from this year’s annual POAC Autism Services Gala. The theme this year was the roaring 20’s, and amidst zoot suits and faux furs, feathers and fedoras, the guests not only showed their support for children and adults with autism by their attendance, but many enjoyed a much-needed night out as well. This is my second year participating in this event, and while Gary Weitzen’s (Executive Director of POAC) welcoming speech is as usual filled with gratitude, there was a bit of a twist this year, an emphasis on an integral issue those of us with children on the autism spectrum must always remember.
All of us owe an enormous debt to those parents who came before us.
It’s a sentiment I write and think about often, as I reside firmly in the younger generation of children with the disorder, being the mother of two boys whose ages remain in single digits. I’ve always said that although my family’s journey has been arduous to say the least, the difference between our path and that of families with offspring at least ten years older than mine cannot compare. A decade or more before my eldest son was born, parents and others advocating for autism services both in government and in the schools had little or no support. In effect, they were starting from scratch so their children could receive even the bare minimum of assistance in terms of education, insurance coverage, and employment and residential opportunities when they reached adulthood.
Despite the difficulties of the challenges laid before them, many of the parents of children with autism who preceded me fought long and diligently to improve all areas of their children’s lives, including changing society’s perspectives on what individuals with autism can contribute to the world at large. They were trailblazers of the highest order, and every time I put my sons on their school busses, attend a recreational activity provided by POAC, or receive reimbursement for necessary therapies from our insurance provider, I try to remember to take a moment to mentally thank the individuals who eased my boys’ way with their efforts.
And Saturday evening, Gary Weitzen and POAC took the time to thank two individuals who exemplify exceptional advocacy.
This year, several of POAC’s board members created the Robin Sims Trailblazer Award to honor a relentless autism advocate, who was herself the mother of two children on the autism spectrum. Robin served for over a decade on the board of the VOR (the only national organization to advocate for a full range of quality residential options and services), and as their Board President until she passed. She also served as a member of the NJCDD, the New Jersey Council for Developmental Disabilities, which is the governing council for the Division of Developmental Disabilities. Robin fought relentlessly to ensure that families, regardless of their respective ethnic and financial statuses, remained an integral part of the decision-making process regarding the fate of their adult children with disabilities.
She was a force to be reckoned with and an inspiration to all who knew her, and a beloved sister, daughter, wife, and mother. Literally days before her death, members of Congress made time to meet with her regarding the Developmental Disabilities Assistance and Bill of Rights Act, listening to her impassioned pleas as she traversed the halls of the Capitol in her wheelchair. Tragically, she lost her fight to cancer seven months ago, leaving a void both within her family and within the autism community that will never be completely eradicated. She was utterly devoted to her two adult children with autism, and will be mourned by all who knew her.
Despite her myriad contributions, when it came time to select the first honoree for the Robin Sims Trailblazer Award, the choice was obvious. Bobbie Gallagher, an Ocean County resident and herself a mother of three, two of whom have autism, was the individual who most represented the same caliber of commitment and constancy in fighting for the rights of all individuals touched by autism spectrum disorders.
Our honoree, who by her own admission could not have accomplished all that she has without the help of her husband Billy Gallagher, has been working toward improving the lives of individuals with autism since her own daughter was diagnosed in the early nineties. She and her spouse were instrumental in soliciting the CDC to investigate a seeming cluster of children diagnosed with autism residing in Brick, NJ. While the study was inconclusive, it was the genesis for other vital studies that have assisted those with autism in the Garden State.
Bobbie’s work and alliance with United States Congressman Chris Smith, himself a tireless autism advocate, helped bring about CARA (the Combating Autism Reauthorization Act), which was passed by Congress in 2006, and H.R. 2005, a bill created to reauthorize the initial CARA act. She is a BCBA (Board Certified Behavior Analyst) who has offered many hours of her time to conduct trainings for parents and professionals through POAC Autism Services, as well as other autism organizations. For several decades, she has made an indelible contribution to our community.
In addition to all the “serious stuff”, she’s also a great mom, tough as nails, and a lot of fun.
I have it on good authority that Robin Sims, were she still with us, would have been thrilled by the selection of this particular individual. As I watched Bobbie receive her award at the Gala Saturday night, an honor capped off by the knowledge that the American flag had been flown over the Capitol in both of their names, I reflected on the torch that will soon be passed to my generation. We have to continue to make whatever contributions we can, both minute and monumental. It is imperative that we forge ahead on the path that has been set before us, one created by a labor of love.
And at the conclusion of Bobbie’s moving speech, as an entire room stood to honor both women in gratitude, I reminded myself it was one of those moments to say “thank you”, just this time out loud.
February 29, 2012
Quiet Time
After a ten day stomach flu hiatus, I giddily place two happy kids on their respective busses, wave to them, and head back to the house. This was a particularly virulent strain of the winter virus, pretending to disappear at certain points, then once again rearing its ugly head when we least expected it. Jeff and I made bets as to which of us would get it first, but somehow we managed to dodge that bullet (no character in Macbeth had anything on us this week when it came to hand-washing and Purell).
I’ve accomplished absolutely nothing of a personal nature, but on the bright side, every linen in my house has been washed three times, and we’ve discovered the most fabulous rug cleaner EVER (it’s called Kids ‘N’ Pets, and it’s MAGIC). After one last wave to Justin on his yellow chariot I step over the threshold into our foyer, survey the land, and take a deep breath. It is so very, very, quiet.
How I love the sound of freedom.
I have never been very good with large swaths of unfettered time spent hanging out in my abode, so the last week-and-a-half has been fairly torturous for me. I’ve always liked taking the kids places, even insisted on it in the “dark days” when convincing Justin that leaving the house wouldn’t summon the Apocalypse. I was that crazy teacher who actually enjoyed field trips, and loved to travel in my personal time when finances would permit. This last chunk of time, spent mostly following Justin from floor to floor making sure we wouldn’t witness the return of his last meal, was wearing for me.
I started a half-dozen projects I never finished because Justin would leave the room and I’d follow, which meant my visual cue was gone, and I’d forget why I went there in the first place. Other than keeping the two kids alive (which clearly is important), I didn’t feel like I had a purpose. That “down time” is when I start contemplating my kids’ futures, and mine.
And some of those visual images are not so pretty.
Recently I read an article on NorthJersey.com regarding adults with autism and their care, and I was reminded that no matter how difficult some of our days here seem to us, at least both of my children have a safe and stimulating place to go most days of the week. The daily reality for families in New Jersey with adult children on the spectrum is not nearly so bright. My native state is currently experiencing a serious gap between the amount of adult services available, and the number of adults with autism looking to join these programs. One of the largest issues that stymies would-be providers is, of course, funding.
Somehow, everything always comes down to money.
According to the author of the article, Mr. Harvey Lipman, it seems that although the Division of Developmental Disabilities (DDD) does provide some funding for each individual, the truth is the cost of caring for that person far exceeds the monies provided. Since non-profits are only allowed to make up the difference through charitable fund-raising, a group’s ability to create new programs to meet the burgeoning need for them is often stopped in its tracks due to lack of funds.
In a further twist that makes providing opportunities more difficult, the DDD will no longer fund the agencies directly to initiate programs. Instead, funds will be placed directly in the hands of the families themselves. While technically this enables parents to pick and choose among existing programs, the reality is that the current programs may not meet their adult child’s needs.
If that is the case, families are then put in the position of signing up for a program that does not yet exist, hoping that other families will do the same, and then waiting for that program to come to fruition. In some cases, this has meant a year or more where a parent is required to be home with their adult child, day in and day out, with no guarantee that the situation will improve any time soon.
For any adult with autism (or their parent) who wants to get out of the house as much as we do here, this situation is untenable.
There are many divisions remaining within the autism community, although I see the gaps between different factions have lessened over the years, which is encouraging. My kids remain in single digits, but I’m beginning to watch my friends with teen-agers start to contemplate some really difficult decisions, which puts them on one side of the divide, while I remain on the other.
Over the past few years I’ve listened as friends and acquaintances have thrown out these queries to the world: Where will my child live? Will he have anything to do all day other than stream videos on his iPad? Will we have adequate child-care for my adult daughter, and one day be able to attend our parents’ funerals? Will I spend the rest of my life as a permanent caretaker?
Contemplating these issues definitely puts having two kids with the stomach flu into perspective.
Everyone keeps talking about the tsunami, the tidal wave that’s burgeoning now and will continue over the next decade, where my eldest son will one day join the fray. To me however, the concept of a tsunami conjures up images of great noise and chaos, a very public display of uncontrollable destruction wreaked. I think the reality for many families will be no less damaging, but perhaps a lot quieter.
Careers will be relinquished far earlier than desirable so that parents can babysit their adult child. Events will be missed due to lack of child-care, perhaps a wedding here or there, or a seminal event like taking a son or daughter to college for the first time. Worst of all, families may watch their offspring’s skills erode as boredom and malaise set in, and might witness the undesirable return of aggressive or self-injurious tendencies. Perhaps within the walls of families lacking viable options of productive engagement for their adult children, chaos will reign as well.
Or perhaps, it will just be very, very quiet, without the freedom.
To read the entire article, please see the URL below:
September 14, 2011
Someone Special Needs You (SSNY)
When my family returned to New Jersey from Washington five years ago, I knew our daily lives would be taking a very different turn. We traded the Smithsonians for the beach, the monuments for proximity to family, and although at times I truly miss our former existence, there is no doubt in my mind it was the best choice for Justin. For one thing, although the school system where we once lived is nationally recognized, my eldest would never have merited an aide during the early days of his education. I truly believe that having this one-on-one experience in his first years as a student in New Jersey was absolutely integral to his development, and instrumental in the creation of the happy boy I call my son today.
Our family has also benefited greatly from our experience with the DDD (Department of Developmental Disabilities), an agency which affords us the gift of thirty hours of respite care a month, providing me with an extra pair of hands that often enables me to leave the house with both of my kids in tow. There have been other benefits from our relocation as well, including far greater access to social opportunities for the boys through several different organizations, specifically POAC (Parents of Autistic Children), and SSNY (Someone Special Needs You).
I’ve written before about our participation in SSNY, from Easter Egg hunts to Halloween activities, as well as visits from Santa, and carnivals. Vince Scanelli and his wife Gina are the co-founders, and their mission is twofold. First, they provide a monthly arena where children of all ages and disabilities can convene to do crafts and various activities with high school buddies. These teens are carefully selected to pair with the children, and provide them with a wonderful opportunity for friendship. Justin has absolutely reveled in the experience over the four years we’ve been attending the meetings, changing from a child who wanted nothing to do with crafts or teen-agers, to a boy who can’t wait to assemble a leprechaun and hug a pretty girl. He’s grown to love these nights, and in keeping with family tradition, I’ve begun to bring Zachary too.
The second part of their mission includes the creation of a group home on a farm, a topic near and dear to my heart. SSNY has been afforded the gift of twelve acres of land in Colts Neck, and as soon as the “i’s” are dotted and the “t’s” are crossed, construction will begin. It will be a working farm for adults with autism, and will include several green-houses as well. Vince wants to have sheep, chickens and alpaca in abundance (I admit, I had to google the latter, I need to brush up on my farm vocabulary), and hopes to provide a safe and productive atmosphere within which a number of fortunate adults with autism can live and thrive, together.
Amen to that.
SSNY is always on the look-out for new participants for their monthly sessions, and they meet the third Thursday of the month at the Colts Neck Reformed Church, from 6:30 to 7:30 in the evening. They also greatly appreciate donations of any sort toward the creation of the group home. Trust me, it is a daunting task to bring this kind of wide-scale dream to fruition. As Vince and his wife are two of the kindest, most generous parents I have encountered on my New Jersey autism journey, I truly hope they succeed in reaching their goal.
If you’re either interested in attending the crafts sessions or volunteering/donating to the creation of the group home, please click on the SSNY website, and I thank you for your time. The first get-together is this Thursday, 9/15, and all families are more than welcome to attend. Hope to see you there!
Colts Neck Reformed Church
72 County Road 537 West
Colts Neck, NJ 07722
6:30 to 7:30
Third Thursday of the month
Colts Neck Journal article (information on the group home, pages 37 and 38)
