HealthMeet: Top 5 exercises for people with intellectual and developmental disabilities

Guest post by Jared Ciner, Certified Personal Trainer, Disabilities Support Counselor
Founder/Director of SPIRIT Fit & Health

As you may already know, an extremely high percentage of people in America are suffering from obesity. What you may not know is that people with developmental and other disabilities are 58% more likely to be obese than the general population, and they make up roughly 20% of our country’s citizens. As a society, it is our duty to provide the necessary resources and support that enable people with disabilities to be healthy. The purpose of this article is to begin enabling people with intellectual and developmental disabilities to take control of their lives through the practice of health-promoting exercises that are safe, effective and tailored specifically towards their needs.

As a certified personal trainer, I believe that partaking in proper exercise and physical activities empowers us as human beings, and allows us to reach our mental, emotional and physical potential. As a support counselor, I know that people with I/DD often require adapted strategies in order to accomplish certain functional goals. In April of 2013, I teamed up with Sam Smith, certified personal trainer and proud young man with Asperger’s syndrome, to design and implement group health & fitness programs for teens and adults with intellectual and developmental disabilities. Below are five exercises that we encourage all people, including those with an I/DD, to practice in order to maximize their strength, health and independence. Each exercise focuses in improving stability, strength and cardiovascular endurance. (The information below is presented as images. Access a readable file here.)

#1: Plank:

Plank

#2: High Knees:

HealthMeet - High Knees

#3: Arm Circles:

HealthMeet - Arm Circles

#4: Single-Leg Balance:

HealthMeet - Single Leg Balance

#5: Squats:

HealthMeet - Squats

A Mother’s Open–Letter to The Arc About Wings for Autism

Dear Sarah,

I am writing to express my continued gratitude for the Wings For Autism event held in Anchorage, Alaska.

Jack and his cat

Jack and his cat

Our 11 year old son Jack experiences high functioning autism, which he was diagnosed with at four years of age.  While Jack did fly at ages 5 months and 9 months respectively, in his memory he has never been on an airplane, which raised concerns for us, since we have scheduled air-travel this summer.

The Wings for Autism experience was far beyond any of our expectations (our family of 4 attended).  The attention to detail, real life/real time airport experience of obtaining tickets, line waiting, Transportation Security Administration (TSA), airport exploring, more waiting at the gate; it was all so needed, and so appreciated.  The time on the aircraft was more than we could have ever hoped for, between the taxiing and “cruising altitude” beverage/snack service, the crew going through their regular motions/speeches and the pilots coaching us through the sounds and motions of the aircraft… truly exemplary.  To add to this, the generosity of all of the hands at play, from the folks getting us through the lines, to the TSA, to the airport staff, to ground crew, to the flight staff and of course the pilots, The Arc of Anchorage, Ted Stevens International Airport for handling the logistics and security of a “mock” boarding and flight on their active airstrip, not to mention all of the volunteers and hours/dollars funneled into this event is staggering and to know that this was all done for our kids, our families to have a better experience, well, it is so humbling and overwhelming to me it makes me want to cry.

Thank you.

As for our Jack, he struggled.  And it couldn’t have been a better place, better environment, FOR him to struggle.  It gave me a good glimpse of what I might see and might expect this summer.  Jack did very well for about the first 1 1/2 hour (noon to 1:30), and then he started to lose his patience.  The noises (especially from children), the waiting, the MORE waiting, it set him right to the edge.  (It is worth noting that there are interventions I could have used/will use in the future, but I wanted him to have a “rougher” experience for this practice run so I could really have an accurate view of where I needed to focus for our trip this summer; also, I knew this was the time for him to have it harder, rather than the “real” time.)  When we boarded the aircraft and sat down in his window seat, he began to emotionally shut down.  He started to have what can best be described as a panic attack, breathing fast and clenching his hands, and said he “didn’t like this anymore” and “wanted to get off/leave”.  I told him we could shut the shade on the window, which we did, and I just quietly talked him through it (I figured he would want the window, but next time maybe I’ll seat him elsewhere).  I told him that the best thing we could do was to sit in the uncomfortableness and be uncomfortable, and eventually the anxiety feeling would start to come down.  I reminded him that if we “ran away” from this moment it would only be much worse the next time (I personally have diagnosed Obsessive Compulsive Disorder, and this is true for me; I try and use this approach with Jack as well), and I knew he didn’t want to miss out on travel and experiencing new places like other people.

Jack eventually pulled the shade back up, and about 20 minutes into it, he calmed a bit and smiled, and said he felt better.  He kept wanting reassurance over and over that we weren’t going to take off.  He is terrified of motion sickness and throwing up, and he kept talking to himself about how he’d be okay, and how he probably wouldn’t throw up on the real trip this summer.  He checked out the bathroom as well.  While he never fully relaxed, all in all it went very well.  When it was all said and done, he claimed it was “awesome” and said on a scale of 1-10, it was a 10 :).

Jack still has worries about taking off/landing, and getting sick on the plane.  We will cross those hurdles as they come.  Yet, this experience with Wings For Autism gave us something we normally could never obtain, which was practice in an airport and on a real aircraft.  Who gets to have that?!!  I don’t think I can fully punctuate how important and valuable this experience was to our family and to Jack; all I can say is thank you, and hope it is a program that can be repeated so more families can benefit like we did.

Jack and his brother

Jack and his brother

One thing that all parents keep in their proverbial back pocket, ESPECIALLY families with special needs children, is the ability to leave/exit a situation if needed.  If the event is too stimulating, your child is having a meltdown, the event is too long, there is too much noise, etc., YOU CAN LEAVE.  It is a safety net, and benefits not only your child, but it is also executed in consideration for the people around you.  A plane is probably the ONLY environment in which you CANNOT leave.  You can’t even really move away.  Knowing this certainty can be figuratively paralyzing for the parents; what are you going to do if things go poorly?  All you can do is the best you can, but that one ace-in-the-hole of leaving the situation is off the table.  It is enough to keep some of us from wanting to knowingly put ourselves and our kids in that potential situation.   That is the way it has been for us.  I would be remiss if I did not admit my own anxiety about air travel this summer, but I know it is something we must rise to and experience, and I will do everything I can to support it going as smoothly as possible for both Jack and for those around us.  It is a tall order.  Thanks to Wings For Autism, it is now more attainable.

Special needs, and all the trimmings that come with it, can be difficult, even impossible, to understand.  The good thing is, people don’t need to understand.  On an empirical level, it is too much to even ask.  To raise my expectations and hope for someone else to understand what our life is like, what Jack’s life is like, might be asking something that person cannot give.  However, everyone is capable of giving compassion.  Compassion does not have to in concert with “getting it”; compassion can stand alone.  And when a parent like me or even Jack himself receives a knowing look of compassion, a gesture in kind, a gentle word or nod, an extension of patience, it is such a gift.  That is the empathy that nourishes and gets us through that moment, that hour, that day, or that week.  It satiates in a way that even I cannot express, and it keeps me going.  It keeps Jack going.  And for this, I will always remain truly grateful.

For this opportunity, we remain in your debt.

Warmest Regards,

Katherine

What Should Everyone Know About Abuse?

By Nora J. Baladerian, Ph.D.

As I thought about writing this blog, I wondered, “what do I wish that everyone could know about abuse?” My first thought was I would want everyone who is a person with intellectual or developmental disabilities (I/DD) or their loved one, to know that abuse can happen to anyone… everyone. Having a disability is not a protection. Many parents and teachers have told me, “well, no one would abuse my child/the children I teach… because they have disabilities.” Their belief blinds them to the reality that abuse not only does happen to kids and adults with disabilities, but in fact it happens more to people with than without disabilities.

The most recent surveys confirm this. In February 2014, the National Crime Victim Survey noted that among those between ages 12-15, those with disabilities were victimized three times more than their non-disabled peers. The 2012 National Survey on Abuse and Disability (7,289 responses) found that 70% respondents with disabilities reported abuse in their lifetimes. And, of these, 90% said that it happened multiple times, and 46% said it happened too many times to count.

Of course it is important to study the problem of abuse to know the extent of the problem. Then it is time to take the next step:  Help the survivors, and make efforts to reduce the risk of abuse. This means, make plans to reduce the risk that abuse will happen to each child and adult with a disability. It also means to make sure that each crime victim receives the psychological support they will need. Finally, it means that the criminal justice system should be available to individuals with disabilities… which it is not now.

The 2012 National Survey showed that nearly half of crime victims did not report the abuse, and of these most did not report, believing that their report would not result in any legal action against the perpetrator. Those who reported the crimes, 54% found that their reports did not result in any legal action. This shows that the fears of those not reporting were well-founded. And, this points us in a direction for reform. What can be done to ensure equal justice is available for crime victims with disabilities?

I believe these findings give us the information needed to design a plan of action. A written  plan of action has been in place at least since 1997, when the California Think Tank on Abuse and Disability convened in Los Angeles, CA and created a plan for the state. Perhaps now, these ideas can become reality. The most essential pieces of the plan include:

  1. Give every parent/careprovider/conservator a copy of the “Ten Tips on Abuse & Disability” to learn that abuse does happen, and the steps to take if it does. If parents and careproviders do not believe it happens or can happen, they will not protect their children nor be aware of what they should do and say when abuse is revealed to them. Parents are taught many things, but this essential area is ignored. ENOUGH! Every physician, psychologist (or other mental health practitioners), disability services agency, school, etc. should make sure that parents are aware and ready to protect their child. By simply handing them the “Ten Tips,” a one page guide, the parents’ have been given their first step: awareness, information, and resources.
  2. Every agency/organization providing services to crime victims and/or people with disabilities should receive an annual one-day training on abuse issues: incidence and prevalence, perpetrator information, risk-reduction strategies and support for survivors.
  3. Every law enforcement professional (patrol, detective, investigator, captain; prosecutor, judge, etc.) should receive at least one day of training each year on the aspects of interacting with individuals with disabilities, conducting a thorough investigation, knowledge on specialized interviewing skills, and in particular familiarization with the daily life of individuals with disabilities and the programs/ individuals who serve them. Budgets for training have always been identified as a barrier, but another is the interest level and commitment of those in charge of training. We have to continue to knock at the doors of agencies, until such training is a standard part of their training package.
  4. Every medical professional working with people with disabilities (that’s all of them, I think!) and mental health professional should be required to have at least one day training on working effectively with people with disabilities, with a particular awareness of the role abuse plays in their lives. Specialized therapies for crime victims with disabilities should be a part of the training of all trauma specialists and crisis and disaster responders.
  5. Most importantly, all individuals with disabilities should be provided information about abuse, maltreatment and assault. They should be able to understand what it is. They should have a plan designed for them or with them by their parents/carers, so they know what is happening if an assault happens, what to do before, during and after. The parents and carers should also receive education, information and training on what they should do before and after their loved one experiences violence.

I believe that it is my duty, and that of others, to do what we can within our scope of work and life, to ensure the well being of individuals with disabilities. I don’t know why I believe that, exactly, but it has turned out that that is my life’s work. I do not say that should be everyone’s work!!!  But, I think that within each of our job duties, there is something we can do to be a part of the solution.

The Arc of the US, and the Disability and Abuse Project, among others, have committed to develop resources that are easily accessible.  Visiting their sites monthly would be a good idea to stay up to date on availability of resources.

References:

U. S. Department of Justice, Office of Justice Programs, Bureau of Justice Statistics, (2012)  NCJ240299 Crimes Against Persons with Disabilities,2009-2012.  Statistics Tables. Retrieved on 2/26/14 from http://www.bjs.gov/index.cfm?ty=pbdetail&iid=4884

Baladerian, N., Coleman, T., Stream, J., (2013) Abuse of People with Disabilities Victims and Their Families Speak Out:  A Report on the 2012 National Survey on Abuse of People with Disabilities, retrieved on 4/1/14 from http://www.disabilityandabuse.org/survey

Baladerian, N.,  (2014) from A Risk Reduction Workbook for Parents and Service Providers, Spectrum Institute. Retrieved on 4/4/14 from http://www.disabilityandabuse.org/resources/ten-point-guide-to-abuse-response.pdf

 

Dr. Nora Baladerian is the Director of the Disability, Abuse and Personal Rights Project in Los Angeles, CA; she has worked in the area of abuse of people with disabilities since 1972. She is a former Board Member of the National Committee to Prevent Elder Abuse and Advisory Board Member of the American Bar Association’s Council on Victims. Dr. Baladerian is a Licensed Clinical Psychologist, Licensed Marriage and Family Therapist, Certified Sex Therapist and Board Certified Crisis Responder. She is the Project Coordinator for the Disability and Abuse Project of Spectrum Institute, and from 2000-2006 the Director of the CAN Do! Project, Child Abuse & Neglect Disability Outreach at Arc Riverside.

April is Autism Awareness Month

Child holding face signApril is national Autism Awareness Month and The Arc and The Autism NOW National Autism Resource & Information Center are working to empower people with autism spectrum disorders (ASD) with the information and resources they need to live their lives to the fullest potential. We are also working to help others become more accepting of people with ASDs.

With the CDC declaring that 1 in 68 children may be impacted by autism spectrum disorders, it’s a fair bet that each one of us knows someone with autism or someone who has a family member or friend with autism. That’s why it’s important to dispel all of the myths and misinformation to understand and accept what having an ASD really means. And that’s why The Autism NOW Center exists, to weed through the volumes of information out there and provide high-quality, vetted resources and information to people with autism and other developmental disabilities, their family, friends, colleagues, teachers, employers and others.

To promote awareness and acceptance, we invite you to view and share a new video about Autism NOW and learn more. Also, we encourage you to join in the conversation! Throughout April, we will publish the personal stories and perspectives of people with autism on the  Autism NOW blog  to generate discussion about autism awareness and acceptance. We invite your comments here and on our social media channels using the hashtag #AutismAware.

The Arc Reacts to Newest Autism Prevalence Data Showing 30% Increase in Two Years

Washington, DC – Today, The Centers for Disease Control and Prevention (CDC) released new data showing the prevalence of Autism Spectrum Disorder (ASD) continues to rise.  The new rate of 1 in 68 reflects a 30% increase from two years ago when the CDC released data that 1 in 88 children has autism.

“The numbers are staggering – in 2008, the CDC reported 1 in 125 children had autism and related disorders.  Today’s data showing nearly double the prevalence since then emphasizes the immediate need for better services and supports for people with autism and their families.   Autism is clearly part of the human condition and people with autism live in all of our communities.  While we have made progress in recent years to raise awareness and improve services and supports for individuals with autism, it’s simply not enough.

“From protecting the Medicaid program – the single largest funding source of services and support for people with autism and their families – to reauthorizing the Combating Autism Act before it expires in September, we have a lot work ahead of us on Capitol Hill to ensure that people with ASD are fully included in society and that ASD prevention, surveillance, public education, and professional training continue apace.  And as a grassroots organization with nearly 700 chapters across the country, The Arc will continue to lead the way and work with people with autism to support their full inclusion and participation in the community throughout their lifetimes,” said Peter V. Berns, CEO of The Arc.

ASDs are a group of developmental disabilities that are often diagnosed in early childhood and can cause significant social, communication, and behavioral challenges over a lifetime.  The Arc is the largest provider organization for people with autism in the United States. Chapters of The Arc provide services and supports for people with autism, their families, and service providers.

The Arc runs Autism NOW: The National Autism Resource and Information Center, a federally funded resource for people with ASDs and their families.  The online center aims to help people separate fact from fiction when it comes to autism.  In addition, Autism NOW provides trainings and information and referral services.

The Arc is also running a national airport rehearsal program for people with autism, other developmental disabilities, and their families called Wings for Autism.  Based on a program launched by one of our local chapters in Massachusetts responding to the needs of a family looking to take a trip to a theme park, the program is a full dress rehearsal for air travel, including the process of ticketing, security clearance, boarding, and at some locations, taxiing on the runway.

And earlier this year, The Arc announced a new partnership with Specialisterne, a Danish nonprofit, to replicate its successful model for recruiting, assessing, training, placing and supporting people with autism in jobs in the tech industry in the United States.  Specialisterne creates meaningful employment for people with autism by building relationships with technology companies that need employees whose skill sets match the characteristics of many people on the autism spectrum.  Chapters of The Arc are working with Specialisterne to serve tech companies, such as SAP and CAI, which are eager to employ people with autism as software testers, programmers, data quality assurance specialists and other technology positions.

Healthy Eating Tips to Help Fight Obesity

Obesity is one of the largest problems facing adults living in the United States. Statistics show that one-third of Americans is considered obese.  Thirty-six percent of individuals with disabilities are considered obese as compared to 23% of individuals without disabilities. The best way to fight obesity is by eating healthy and staying active. Unfortunately, for individuals with disabilities there can be physical limitations as to what they can do in regards to physical activity.  While most activities can be modified to fit the person’s individual fitness needs, this still puts a greater importance on the necessity to eat healthier. Poor nutrition, which can lead to obesity, can also be a catalyst for many other health related issues too like high blood pressure, diabetes, heart disease, and fatigue.

There are many reasons as to why individuals with disabilities may not eat as healthy as they should – lack of nutritional awareness, limited income, trouble cooking themselves, difficulty chewing or swallowing specific foods, or sensitivity to certain tastes or foods. If a caregiver cooks meals for them, the individual may have limited input as to what types of foods are prepared. Ensuring that the individual has a say in their meal choices and making a few key changes can help tremendously when it comes to healthy eating. A simple change such as drinking more water instead of sugary beverages throughout the day will help keep you hydrated, feeling fuller with no calories, and generally doesn’t cost a thing.

Teaching individuals with disabilities how to save money while at the grocery store will help them pocket some extra cash for other activities or allow them to buy more food.  Simple tips such as, using coupons, buying store brand or generic brand versus name brand items, looking for daily specials, and paying attention to expiration dates will help stretch those food dollars.  Fresh fruits that are in season usually won’t go bad as quickly and are more cost efficient. Instead of buying yellow bananas that are already ripe (and can go bad quickly) try buying them when they are a little green so that they will last longer. Once bananas ripen, freeze them to make banana bread!  Individuals with disabilities who also have mobility issues might have trouble cutting up foods such as, vegetables and fruits. Specially adapted utensils can make this process easier and safer. You can also try purchasing frozen or canned fruits and veggies instead (choose fruit that is canned in 100% fruit juice and vegetables that have “no salt of sodium added” for best options). They will last longer, are already cut up, and are usually a little cheaper.  Nutritionists have also shown that there is little difference between the nutrients you receive from fresh and frozen veggies, so go ahead and grab the frozen ones!  Large supermarkets and buying in bulk will usually have cheaper prices as opposed to local or specialty shops too.

Planning out weekly meals will also help to know what foods to buy in the grocery store to ensure that individuals are eating healthy every day. When working with the individual with a disability to plan out meals for the week make sure to keep it simple. Recipes that are too difficult or take too long to prepare can be discouraging and may make them not enjoy cooking and avoid it. Recipes should have no more than 5 or 6 ingredients. A good rule of thumb when helping individuals make their meal choices is to make sure that 3 of the 5 food groups are present in each plate. This will help to allow for the individual to choose foods they like, but still keep a balanced plate. Making a larger recipe that can be frozen and eaten again later in the week is also a good idea to have for nights when there is little time to cook instead of running out to a fast food restaurant. Cookbooks for individuals with disabilities, like Cooking By Color, help to clearly illustrate what ingredients are needed and how to prepare simple, yet healthy, meals in smaller portions. To learn more about Cooking By Color’s concept and planning for successful eating, check out author Joan Guthrie Medlen’s, HealthMeet webinar.

Many resources are out there to help teach the importance of keeping a balanced diet. Choosemyplate.gov and the CDC’s new Healthy Weight Issue Briefs provide information on obesity and maintaining a healthier diet. The Arc’s HealthMeet page contains resources and webinars regarding more healthy eating tips and links for further information.

Celebrating World Down Syndrome Day While Seeking Justice for Individuals with Down Syndrome in Today’s Society

On March 21st, 2014, the world will celebrate the ninth annual World Down Syndrome Day. While people with Down syndrome have made significant strides in education, employment, and independence, there is so much more we can do as a society to ensure people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities.

Ethan SaylorThe wrongful death of Ethan Saylor is just one example of the work left to do. Ethan, a 26-year old Frederick man who happened to have Down syndrome, died senselessly in the hands of three off-duty Frederick County Sheriff’s deputies in a movie theater in January 2013. Ethan’s death was tragic and avoidable. NDSS has advocated, alongside the Saylor family, for Governor Martin O’Malley of Maryland to ensure that law enforcement, first responders and other public officials all receive the very best training regarding interaction with people with disabilities and for the US Department of Justice (DOJ) to conduct an independent investigation into the death of Ethan Saylor. Emma Saylor started a change.org petition, which has gained over 370,000 signatures, calling for Governor O’Malley to investigate the death of her brother Ethan. In September 2013, Governor O’Malley issued an Executive Order establishing the Maryland Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities. This is Maryland’s chance to lead the way for other states on these critical issues, and ensure Ethan’s legacy lives on forever.

Just a few weeks ago in Atlanta, Georgia, Judge Christopher McFadden overturned a jury’s guilty verdicts against William Jeffrey Dumas. Dumas was convicted of repeatedly raping a young woman with Down syndrome in October 2010. According to his ruling, McFadden claims that a new trial is necessary because she did not behave like a rape victim. Even as we celebrate World Down Syndrome Day, these moments of blatant discrimination deserve our attention. NDSS condemned the judge’s actions and through an op-ed response demanded that the state of Georgia Judicial Qualifications Commission begin proceedings to remove him from office. We can all get involved by supporting a change.org petition calling for McFadden’s removal; and that justice is done with the conviction being reinstated.

Last week in Plaquemine Parish, Louisiana, a mother of a baby, Lucas, who happened to have Down syndrome, was charged with his death after poisoning him—an action that deserves condemnation and for which justice must be sought.

While we can take pause today and celebrate the achievements of people with Down syndrome all around the world, we must be reminded that for us to fully achieve our mission of equality and inclusion, we must ensure that all people with Down syndrome and other disabilities are valued, respected members of their communities. The work and partnership of The Arc’s NCCJD and NDSS is vitally important to making sure people with Down syndrome and other disabilities have the right to a meaningful life in their communities, whether it’s through a career of their choosing, a living arrangement of their liking, recreational activities of their selecting, or just friendships of their electing. We, as the national advocate for people with Down syndrome, want to be sure what happen to Ethan Saylor and other tragic, unfortunate cases never happens again.

National Down Syndrome SocietyNDSS is proud to partner with The Arc’s National Center on Criminal Justice and Disability (NCCJD), a national clearinghouse on criminal justice and disability issues funded by Bureau of Justice Assistance, U.S. Department of Justice, that provides resources, information and referral, training, technical assistance and evaluation for criminal justice and disability professionals and programs. To that end, NDSS continues to be dedicated to issues that prevent harm, abuse, and victimization of individuals with Down syndrome. Unfortunately, we learn about these tragic, unfortunate, and senseless cases involving individuals with Down syndrome every day; and we seek to advocate on the behalf of these individuals and their families as they seek justice. To that end, NDSS continues to be dedicated to issues that prevent harm, abuse, and victimization of individuals with Down syndrome.

The Arc Launches New Diversity Initiative

Washington, DC – The Arc is pleased to announce it has been awarded a grant for $100,000 from the MetLife Foundation to make the programs, services and supports offered by chapters of The Arc nationwide more accessible to culturally diverse populations with intellectual and developmental disabilities (I/DD) and their family members, and to ensure that the chapters are addressing the needs of the different cultures in their communities.  To achieve these goals, The Arc will conduct a comprehensive assessment of the cultural competence within the network of 700 chapters.

This assessment will include substantial input from The Arc’s chapters as well as from current and potential stakeholders in ethnically and culturally diverse communities across the country.   In the course of the assessment, The Arc will collect information about best practices in serving a culturally diverse population drawn from the disability field, as well as health care, social services and other non-profit and for-profit industry segments.  As a result of the assessment, The Arc will develop a report that identifies the challenges developmental disability providers face when serving people with I/DD who come from diverse backgrounds and recommends solutions. Based on the report, The Arc will develop an action plan defining specific actions that can be taken by chapters of The Arc to achieve greater cultural competence.

“Organizations like the MetLife Foundation enable us to continue our work to promote inclusion and civil rights for individuals with intellectual and developmental disabilities, and with their generous support we will be able to better serve communities across the country. The Arc has a network of 700 chapters and those chapters represent a spectrum of cultural diversity. We recognize that for The Arc to be successful, we must find ways to support our organization’s growth to include more diverse populations,” said Peter Berns, CEO of The Arc.

The Arc to Launch New National Resource Center for Future Planning

The Arc is pleased to announce it has been awarded $800,000 over two years by the May and Stanley Smith Charitable Trust to develop a National Center on Future Planning for families and individuals with intellectual and developmental disabilities (I/DD).

The goal of this project is to support the estimated 600,000-700,000 families in the United States where an adult with I/DD is living with aging family members and there is no plan for the individual’s future.  The Center will empower aging caregivers to plan for the future of their adult son or daughter with I/DD, providing families with information, resources, and practical assistance in person-centered planning; guardianship and supported decision-making; housing and residential options and supports; special needs trust and representative payee services; financial planning; and personal care and independent living supports.

“There is a silent crisis facing our country that desperately needs a solution – what happens when there is no plan for how an individual with an intellectual or developmental disability will live life to the fullest when the loved one they live with is no longer with them?  In the last twenty years, people with disabilities have made great strides to live independently, be a part of their community, and experience all they want in life.  But too many people are facing the next chapter in their lives without a plan, and The Arc is seeking to provide help to families and people with disabilities looking for that roadmap,” said Peter Berns, CEO of The Arc.

The Arc’s new Center for Future Planning will have a robust online presence, with an interactive and user-friendly website geared toward older learners, with extensive, vetted content.  The website will include a database of sources for local-and state-based information, people, and related organizations, and a searchable provider database.  The Arc will also operate a telephone and online information and referral system, connecting people to help in their communities.

Chapters of The Arc will play a critical role in this Center, as they will be able to access best practice protocols when providing future planning resources in their local communities.  The Center will also feature a National Pooled Special Needs Trust, develop protocols and business infrastructure to provide private trust companies with outsource assistance in servicing existing and future beneficiaries under individual special needs trusts, create training and networking opportunities for families and professionals in the field, and establish a volunteer action network.  This new network will pair self-advocates with volunteers without disabilities to visit people with I/DD in community settings and monitor their satisfaction and quality of life.

“This ambitious project aims to support people with intellectual and developmental disabilities and their families as they face a big transition in their lives.  Families and people with disabilities are seeking out these resources, and just as The Arc has done for last sixty years of this movement, we are innovating to be a leading resource into the future,” said Berns.

The Best Part of Your Day

By Shanell Mouland, Blogger at GoTeamKate.com

KateIf our Kate was to sit quietly beside me on any given day you might never know she was different.  Her eyes are impossibly blue and her blonde hair is cut just above her chin with bangs framing her angelic face.  She is tall for her age; almost four.  For all intents and purposes she could, potentially, appear ‘normal’ if there is such a thing.

If you look closer you will see she that her blonde hair is wild about her head for lack of brushing, because brushing hurts and she wears a well-worn bright red Teenage Mutant Ninja Turtles t-shirt, because change is hard.  In her mouth is a chewy tube that helps her regulate a need to chew and in her tiny hand is Master Splinter, the Sensei of the aforementioned turtles.

She is likely up on her toes, bouncing or spinning.  If she is happy her arms are flapping. She is usually happy. The idea of her sitting quietly is almost humorous to us now.

She may be repeating a comforting phrase.  She has acquired much language even if she cannot always use it properly.

“Wet’s do dis.” (Let’s do this) A phrase she’s pulled from her turtle show, no doubt.

Kate has autism and she’ll be the best part of your day.

Grace, our eldest daughter (5) and Kate’s best friend will often have one hand at the ready, for when Kate sees fit to take off.  She is young and quick and can often capture her sister before me.  You’ll see this scenario play out whenever we are in public.  I’ve often said the four words Grace utters most in public are:  “Mama, she’s getting away!”

My husband and I make every effort to do things as a family.  If we feel Kate will be overwhelmed we obviously give her a pass and she can spend some down time with her grandparents, however, if we feel Kate will enjoy any given excursion, look out, because she is coming.

Our family loves a certain Japanese restaurant in our city.  Do I call ahead and warn them we are coming? No.  Do I announce on social media that we will be there in case someone was planning a quiet dinner?  No.  We attend the restaurant with our family just like you would.

Yes, Kate will most likely not sit in her seat.  She will probably visit most tables in the restaurant anxious to show off her turtle figure.  She will explore the textures of the seats and the tablecloths and the curtains.  She will protest loudly when she is not allowed in the kitchen.  She will make sure each patron eating dinner that evening is fully aware of her presence.  She will call the women, Mama and the men, Daddy and she will hug more than a few.

In our experience, most people will smile broadly and engage our little social butterfly.  Some will shoot us that ‘how dare you bring a child to a restaurant like this’ look and some will stare at us with pity.

As we enjoy our Sushi and Tempura and some great conversation with the folks at table five about autism and our family, the woman at table nine purses her lips and sips her wine annoyed that mid-miso soup she was privy to Kate yelling to the chef clear from our table:  “Dat your hat, daddy?  I have dat hat?”  Her husband seems oblivious to her annoyance and taps on his phone while murdering his teriyaki.

Table five dissolves into laughter at Kate’s cute request for the chef’s hat.  They order more wine and ask Kate which turtle is her favorite.

Table nine gets up and leaves.  They pay their check with a disapproving glance from the Mrs. towards us.

Honestly, who brings someone like that woman out to a public restaurant where a family is trying to enjoy a meal, anyway?

And then I hear:  “Mama, she’s getting away!”

 

Shanell Mouland is a mother, teacher and writer from New Brunswick, Canada. When she isn’t advocating for the rights of individuals with autism she is writing a children’s book called: Sunny and Sinclair. She is actively seeking a publisher because the three full time jobs mentioned earlier take a lot of time away from important things like coffee drinking and relaxing. She can be reached through her website: goteamkate.com.


Learn more about The Arc’s activities for Developmental Disabilities Awareness Month at www.thearc.org/lets-go-out, and join our March 29 event on Facebook.