disability resources - INDEX

Tag: disability resources

24
Apr
2013

Early Identification Makes a Difference: An Educator’s Perspective

This week we are pleased to introduce Jason Travers PhD, BCBA-D, an Assistant Professor of Special Education at the University of Massachusetts Amherst. Jason will share his personal experience with early identification and the impact it made on his life.

My Work Begins

I began my work in autism while studying for my Bachelor’s degree in Special Education at UNLV in 2000. I had quit a construction job to return to college and the decision was taking a financial toll on me and my new wife.

There were many fliers in the hallways of the College of Education requesting candidates to help with early intensive behavior intervention in home-based programs for children with autism. I figured it would be a great way to get some experience and make a little money.

Soon I was working for and with three families which included sons with autism. It was a decision that would come to define me as a professional.

Meeting Alex

Perhaps the most influential moment was my experience with Alex and his family. Alex had recently been diagnosed with autism when his parents contacted me about starting up an intervention program.

A couple of weeks later, I arrived at their home with a few other behavior therapists and an experienced consultant. The family was desperate for help and needed support.

For several months prior to our arrival, Alex struggled to communicate with his parents and relied primarily on inappropriate behavior to get his needs met. I could tell they were a loving family, but they were also unsure of what to do to improve the situation.

Beginning Our Treatment

I was eager to begin our effort and over the next couple of days we began teaching play, communication, and other behaviors. Initially I found it very challenging as Alex refused hand over hand prompting.

The other children I had been working with had established these skills before my arrival. I was unsure what to do and so were Alex’s parents.

The consultant, however, continued with the procedures and by the morning of the second day things had changed dramatically.

Making A Breakthrough

There were six of us in a small bedroom when Alex began to respond to our spoken directions. We spread around the room and took turns asking him to “come here.” We cheered every time he went to the person who called him and he loved our cheering.

A few minutes later he completed a puzzle, played with some blocks, and said “buh” to request bubbles. Alex’s parents were overcome with tears of joy as they felt they were witnessing nothing short of a miracle.

Just two days before their son was unable to answer to his name, had never “asked” for anything, and couldn’t follow simple directions. I was amazed at the quick transformation and still get emotional whenever I think about it.

Committing To Help

I was immediately convinced that day that I would base my career around autism and began planning accordingly. I continued to teach Alex for 9 months and documented his progress before leaving to start a job as a special education teacher.

During those months, Alex began speaking to communicate, drawing and writing, playing appropriately, and went to the movies and other places in the community with his family.

Goals for the Future

This experience was a defining moment in my life and has fueled my career. While working as a special educator for students with autism, I earned my Master’s degree in special education with an emphasis on autism and developmental disabilities. Eventually I earned a PhD in special education. I now conduct research and teach courses related to behavior analysis and autism at UMass Amherst.

After 13 years, the memory of those first days with Alex remains vivid and powerful. Alex and many other children like him have inspired my professional goal: to help all families affected by autism gain access to quality services that will allow their child to achieve their full potential.

Early identification and early intensive behavior intervention is critical to this goal and the reason why I am involved with Massachusetts Act Early.

About the author

Jason Travers, PhD, BCBA-D is an assistant professor of special education at the University of Massachusetts Amherst. He researches the efficacy of technology to prevent contextually inappropriate behavior and promote early literacy skills of learners with autism. Jason also investigates the disproportionate representation of diverse children with autism.

10
Apr
2013

One in a Million: A Physician’s Perspective

categories: Autism, Family

This article is the next in our series on Early Identification and was written by Dr. Stephanie Blenner. Dr. Blenner is from Boston Medical Center and is a member of the MA Act Early Steering Committee. She is also a LEND alum.

Three in One Thousand

She had long hair and unyielding eyes. I was only a resident at the time, so I sat to the side while the attending physician told the mother that her child had something called autism.

He explained it was a neurodevelopmental disorder. When she asked what to do, he told her to spend time with her at home.

At 3, she was too young for school or formal intervention. When we left the room, he told me I was lucky to meet a child with autism because it was so rare.

One in Eighty-Eight

Over 15 years later, we see children with autism every day in our clinical program. We never tell families it is rare or that they should wait to intervene. Instead we talk about how common autism is, how many other families have sat in their shoes, and the importance of early intervention.

We do this in English, in Spanish, in Vietnamese, sometimes with both parents, sometimes with just the mother or another family member. As clinicians, we do this so often the packets of printed information for families need to be restocked weekly.

This is our job as health professionals, to assure children are screened, diagnosed and receive the intervention that can make such a difference.

One in Fifty

Autism awareness requires more than just describing what autism is, explaining that it is common and that early treatment is critical.

We also need to to let people know that while autism is all too common, children with autism are not.

That each is singularly unique and special. That the chance to identify a child with autism early means that, through intervention, their community will have a unique opportunity. They will be able to know and appreciate that child as possibly only those closest know them; as the individual behind the disorder.

In this way, as we work together on autism awareness, we remind ourselves why this work is important. That the most recent sobering 1 in 50 statistic belies what each of us privileged to do this work knows, that each child is more truly one in a million.

03
Apr
2013

Why Early Identification is Important to Me: A Parent’s Point of View

categories: Autism

This month we are pleased to introduce Elaine Gabovitch, a respected professional in the field of disabilities. Elaine has many titles; State team leader, Faculty Member, and Director to name a few. Yet this month, she shares a personal view from one of her most important roles in life, parent of a child with autism.

It’s personal

Every year in April, people who care about autism observe and even celebrate Autism Awareness Month. One thing I personally celebrate is how far we’ve come in identifying autism spectrum disorders in young children.

It was 18 years ago when early identification became vitally important for our son. Back then, I didn’t know a thing about autism, but I knew our son wasn’t meeting his developmental milestones on time. When we shared our concerns with his pediatrician, he advised us to “wait and see.”

Instead, I self-referred to Early Intervention who evaluated my son and sent us to specialists. Soon he received a diagnosis, Early Identification services started, and our long trip forward began. Over time, I met other parents whose pediatricians also reassured them to “wait and see.”

It was a growing problem in need of a solution.

That was back in the 90’s, and while early identification has come a long way since then, it still has a long way to go with heightened public awareness.

It’s Prevalent

Only last year, the CDC estimated that every one in 88 children has an autism spectrum disorder. That’s one in every 54 boys and one in every 252 girls. This past month, a parent telephone survey study reported one in 50 children may be diagnosed on the spectrum.

That’s 2% of all children!

It’s Urgent

Early intervention works. The earlier the screening, the better the results for children and families. But for children who have families from diverse cultural and racial backgrounds, real disparities exist. We can and must do better.

By teaching all families about healthy developmental milestones and what to do when concerned, we can do better. And by training all pediatric clinicians about screening, we can change the conversation from “let’s wait and see,” to “let’s do a routine screen,” leveling the playing field for all children.

It’s Treatable

Take it from me, autism spectrum disorders are treatable. Over the years I have met many children with autism and their families and each has a different story to tell. Early intervention was a crucial part of those stories, as it helped beyond what those families could possibly have imagined at the time of diagnosis.

Identification is the key to getting help. Let’s build awareness here in Massachusetts by getting everyone on board through education, participation and identification.

Over the month of April, we’ll hear from other members of the Massachusetts Act Early state team about why early identification is important to them too.

About the author

Elaine Gabovitch, MPA is the Director of Family & Community Partnerships for the UMass Medical School-Eunice Kennedy Shriver Center, family faculty in the Shriver Center’s LEND program, and an instructor in the UMMS Department of Family Medicine & Community Health. She currently serves as state team leader for the Massachusetts Act Early program and as one of 25 national ambassadors appointed by the Centers for Disease Control and Prevention (CDC) to promote the “Learn the Signs. Act Early.” public health program in Massachusetts. For more information, visit the Massachusetts Act Early Web Site

20
Mar
2013

LEND Program Makes Dream a Reality

categories: Autism, Voting & Government

Bill S.601: [We resolve] that a special commission is hereby established for the purpose of making an investigation and study relative to the need for accessible homes for… families that include persons with disabilities. (188th session)

Wow. How incredibly satisfying. Who would have thought I would have a bill before the MA Legislature? And all because of my LEND Fellowship.

Joining LEND

As a parent of a child with a disability, I came to LEND from a place of isolation and frankly, a great deal of anger. I was angry at all the obstacles I now faced with my son who uses a wheelchair.

Although the Americans with Disabilities Act (ADA) had increased access in the last twenty plus years, there was still a tremendous amount of work to do.

Finding Support From LEND Colleagues

LEND provided me with the tools I needed to address the frustrations I faced. As part of a diverse cohort of ten other like-minded individuals, I was able to break through an intense period of loneliness.

I wasn’t alone; there were other people who thought about these issues. There were parents and individuals with disabilities as well as professionals already working in the field.

As I watched my colleagues transform, I knew I was growing as well. It was safe to speak your mind in the group — but more importantly, we learned to listen. Really listen. And I learned to control my anger and focus that energy in a more productive direction.

Thinking About “Visitability”

My LEND capstone project focused on the housing market and the incredible shortage of accessible housing. While we could modify our own home to accommodate our son’s disability, as he grew, it had become more and more difficult to visit other people’s homes.

I discovered “visitability,” a simple concept that requires three features in new home construction: one door into a house without a step, a first floor bathroom, and 32″ wide doorways.

Wouldn’t it be wonderful if new homes were built this way? These three simple elements would allow our family to visit anyone!

My Capstone Project

My LEND capstone project was a plan to get this simple idea accepted as a new building standard. Part of the plan was to get a dialogue started between diverse groups who would benefit from access.

Bill S.601 is the beginning of that conversation, one that has taken on a life of its own. Now I read about groups voting to support the bill and representatives signing on. Such a simple idea; yet, what a profound difference this could make for the aging and disabled populations.

LEND helped me in accomplishing my goal…what about you? Join us next week to learn more about opportunities LEND can provide.

27
Feb
2013

Resources for Deaf, Late-Deafened and Hard of Hearing People

categories: Deaf & Hard of Hearing

This month we have been focusing on the services and resources available for people living with hearing loss. As the Information and Referral Specialist at the Massachusetts Commission for the Deaf and Hard of Hearing (MCDHH), I respond to inquiries from individuals and organizations on a broad range of topics.

There is never a dull moment in my job! A day doesn’t go by that I don’t learn something new about the technology, services, or needs of the people living with hearing loss in Massachusetts.

Common Topics Of Discussion

Some of the most common topics I discuss with people include American Sign Language (ASL) classes, Deaf Culture, becoming an interpreter, working with interpreters, and who is responsible for paying for interpreters.

Assistive Technology (AT) is also a common topic including related funding, and vendors for AT use in the home, the classroom, and the office.

Direct services available for deaf and hard of hearing people of all ages are a resource shared with many, as well as hearing aid technology, funding, coverage, and how to choose the best hearing aid. I also get a lot of questions about the Americans with Disabilities Act and its application.

Why I Love My Job

In my position I discuss the physics of sound and the physiology of hearing with individuals and organizations making inquiries. The range of technology includes everything from pen and paper to Smartphone apps; the simplest assistive technology in use for decades to the newest technology still in a development phase.

The best part of it all is I have the privilege of seeing the power of information change people’s lives.

Resources

The following ASL videos highlight services offered by the Massachusetts Commission for the Deaf and Hard of Hearing.

Additional Resources

Best Practices: Assistive Listening Devices and Systems / Information for Consumers and Information for Vendors
These documents are made available in keeping with the Mission of MCDHH to provide accessible communication, education and advocacy to consumers and private and public entities.

The Savvy Consumer’s Guide to Hearing Loss by Karen Rockow
This wonderful resource guide provides invaluable information for people that have lost all or most of their hearing during their teenage or adult years.

Improvements in our Educational System for Deaf and Hard of Hearing Schoolchildren- MNIP Fact Sheet
Aurora Wilber, Project Coordinator at the Massachusetts Commission for the Deaf and Hard of Hearing, is the contributor for information on this fact sheet.

For additional information, contact Massachusetts Commission for Deaf & Hard of Hearing at (617) 740-1700 TTY, (617) 740-1600
(Voice)

13
Feb
2013

A Personal Journey to Cochlear Implantation

categories: Deaf & Hard of Hearing

My name is Jonathan O’Dell, and I’m the Assistive Technology and Training Specialist at the Massachusetts Commission for the Deaf and Hard of Hearing.

When Hearing Aids Were No Longer Enough

I became ill with meningitis at age 10 and I lost my hearing quickly. I remember wondering why I couldn’t understand the radio or television anymore, but it wasn’t until a few months later that my father thought to have my hearing tested and we found out I would be needing hearing aids.

I used a body aid at first, a big box with a wire snaking to my earpiece; then I wore smaller behind-the-ear types for many years. Unfortunately my hearing kept getting worse, and soon even the most powerful aids didn’t help me anymore. That’s when I decided to see if a Cochlear Implant (CI) would help me.

What Is A Cochlear Implant?

CI‘s are designed to help people with severe nerve damage – “sensorineural hearing loss” is the medical term – by taking over the functions of the damaged cochlea. That’s the part of the ear where speech and sounds are received as vibrations and sent to the brain as electrical signals.

When the cochlea is damaged the brain doesn’t get the full signal anymore, which means that while you may hear something you might not understand what it is, or what someone is saying to you, even though you can hear them speaking.

A CI requires surgery and is done under full anesthesia, so I asked a lot of questions about safety and effectiveness from my surgeon and his team. They told me it was a safe procedure, problems were fairly rare, and that while they couldn’t guarantee my hearing would be better, they were pretty sure it would help me quite a bit. So I decided to go for it, and my left ear was implanted in the winter of 2011.

After The Surgery

It took me less than two weeks to recover from the surgery, and just a few weeks more to get used to the initially very strange way that everything sounded. After I had gotten used to it, I was tested to see how much it helped. I had improved from 0% speech discrimination (understanding words without speechreading) to almost 60%.

I did so well that I decided to get my right ear implanted also, which was done in February of 2012. The surgery was more complex this time, and the recovery period longer, but the results were equally impressive.

Is A CI Right For You?

If you notice that even a really strong hearing aid isn’t helping you anymore, maybe it’s time to look into getting a CI for yourself. You’ll have to undergo several tests and doctor’s visits to see if you are a candidate. The process takes a long time, but it was absolutely worth it for me and many other late deafened adults I’ve talked to who also went for it.

I’m much more confident now in approaching anyone, anywhere to have a conversation. My hearing aids just amplified sounds and didn’t make them any easier to understand, but making sounds easier to understand is what CI‘s are designed to do. The implants are only getting better; they keep getting smaller, and at least one manufacturer has come up with a waterproof CI for people who want to hear while on or in the water.

If you have personal questions for me, I’ll be happy to answer them if I can. Contact me at Jonathan.ODell@MassMail.state.ma.us

Want to learn more? Check out the Food and Drug Administration’s Cochlear Impant Information.

06
Feb
2013

The Massachusetts Commission for the Deaf and Hard of Hearing Programs and Services

categories: Deaf & Hard of Hearing

The Massachusetts Commission for the Deaf and Hard of Hearing is the principal agency in the Commonwealth for enabling Deaf, late-deafened, DeafBlind and hard of hearing people full participation in all areas of life. This is accomplished through efforts to facilitate effective public policy, provision of technical assistance, offering specialized services, advocacy, and public education.

This month we are pleased to introduce Debra Lobsitz, Information and Referral Specialist from the Commission to share her expertise and personal experience at the Commission.

Addressing Questions

As the Information and Referral Specialist, I try to provide people with up to date information on topics of interest to the people we serve. Most recently, The Children’s Hearing Aid Bill – Chapter 233 of the Acts of 2012 (HB 52) was implemented. As of January 1, 2013, on the date of renewal for your medical insurance, hearing aids for children must be covered by your medical insurance. There have been several questions about the details and I want to address some that are most frequently asked.

Who is covered?

Children 21 years old or younger with fully insured medical plans. Self-funded/self-insured plans are not required to conform to this legislation. Here is a list of self-insured employers in Massachusetts.

What is covered?

Expenses up to $2,000 for one hearing aid per ear requiring a device are covered every 36 months. In addition to that, the initial evaluation, fittings, adjustments, and supplies are also covered. Batteries are considered supplies.

Where can I find more information?

The Massachusetts Hearing Aids for Children Coalition or MassHAFCC , a grassroots statewide network that focused on the passage of the Bill provides a blog. This blog offers guidance on what steps to take if coverage is denied.

Consumer Affairs and Business Regulations issued a bulletin on December 31, 2012

Topics for the upcoming weeks will include improvements in our educational system for Deaf and hard of hearing students, a personal account of receiving a cochlear implant, and technological solutions for communication access.

Join us in the weeks ahead to learn more.

30
Jan
2013

Managing Your MS Support Network

categories: Multiple Sclerosis

Over the past few weeks we have talked about the impact of invisible symptoms of MS. Symptoms can impact a person’s job, relationships, and ability to manage independently. Some resources to help provide support are listed below.

Medical Team

The medical team for a person with MS should include a variety of professionals. The neurologist is usually the primary healthcare professional and can often be the gateway to other professionals through referrals.

The MS Clinical Care Network: Available through the NMSS website, this resource offers information tailored specifically to different professionals. Clinicians can also sign up for a professional e-newsletter.

Partners in MS Care: Health care professionals recognized as Partners in MS Care demonstrate knowledge and experience in MS care, have a special interest in treating people living with MS and work closely with the National MS Society. To find a Partner in your area visit Partners in MS Care.

Emotional Support

Emotional support or services can be critical to keeping a family afloat. It may be important to have a therapist familiar with MS or chronic illnesses.

The National MS Society maintains a database of professionals with experience and interest in treating people with MS and a network of peer-led support groups. Please call 800-344-4867 to request referrals in your area.

Msconnection.org is a website for people with MS to connect with other people with MS. The site offers one-to-one peer connections, forums and resources.

Caregiver.com and the National Family Caregivers Association both offer a variety of resources to support caregivers.

Your own network

Some people have a hard time accepting help and an even harder time telling people what would truly be helpful. There are programs to help coordinate the efforts of caring friends and family and to guide them toward what would be most useful.

CaringBridge is a free service that connects and updates your network about ongoing health status, treatment, surgeries, progress in therapies and recovery. In return, family and friends give support and coordinate volunteering for tasks.

Lotsa Helping Hands is a free web-based service that allows family and friends to more easily assist with household tasks. It’s an easy-to-use, private group calendar, specifically designed for organizing helpers. It’s also a place to keep your network informed with status updates, photo galleries, message boards, and more.

I hope you found the information about MS posted this month to be informative and interesting. Please feel free to contact the National MS Society at 800-344-4867 with any additional questions.

March 11-17th is MS Awareness Week!!! It is the perfect time to join and help build the MS Movement. Visit msnewengland.org and look for the MS awareness week banner for ideas about how can get involved!

23
Jan
2013

Multiple Sclerosis Caregivers Can Make a Difference

categories: Multiple Sclerosis

Over the past three weeks, we have discussed some of the invisible symptoms that are associated with Multiple Sclerosis (MS). Challenges that people with MS may be facing every day, but others aren’t aware of. Awareness of these invisible symptoms is especially critical for caregivers.

We focused on depression and cognition, but other invisible symptoms can have a significant impact on daily activities and quality of life. Symptoms like pain, visual disturbances, fatigue, and bladder dysfunction might go unnoticed by friends and family, and it is extremely important for caregivers to have awareness and knowledge of them.

The simple fact is when invisible symptoms are addressed, it can truly make a difference.

Stepping In

When MS impacts a person’s ability to manage independently, someone may need to step in to help. That someone can be a spouse, partner, an adult child, parent, sibling, or even a close friend.

The key to being a good helper is knowing what the person needs and invisible symptoms can pose a challenge to understanding those needs. Symptoms can even change day to day, creating more confusion about the appropriate types and levels of support.

Two Way Communication Is Vital

Bob’s* wife, Paula, has MS and he has been her primary caregiver for more than 20 years. Paula has used a wheelchair for 15 years and most days Bob feels confident helping her dress and transfer to her chair. But when her MS symptoms flare up, Paula can have new symptoms of pain and double vision.

Bob shared that he never knows what each day will bring, and he relies on Paula to tell him how she is feeling so that he can adjust their routine. Two-way communication is important, as it makes it easier for both Bob and Paula to have a clear understanding of needs and expectations.

Caregivers Taking Care Of Themselves

It is important to remember that the caregiver must take care of their own physical and emotional health too. The risk of caregiver burnout can be very real, but there are steps to help avoid or reduce it.

Seeking emotional support and arranging for additional help can allow the caregiver to focus on their needs and remain a strong support for the person with MS.

The National Family Caregivers Association and www.Caregiver.com are organizations that focus on supporting the caregiver. The National MS Society also offers information and resources for caregivers. You can view these materials at National MS Society Caregiver Resources Page or call the Society’s information and resource line at 800-344-4867.

Please join us next week as we review some helpful resources for living with MS.

*Names have been changed.

16
Jan
2013

Supporting People with MS Beyond Their Physical Needs

categories: Multiple Sclerosis

This week Dawn Russo, Senior Program Manager of the National Multiple Sclerosis Society, will focus on cognitive changes in MS. Like depression, cognitive changes may be invisible to family and friends. But for the person experiencing them, the impact can be stressful and far-reaching.

Understanding the cognitive impact

Approximately 50% of people with MS will experience some cognitive impairment because of the MS. Impairments can include memory problems, difficulty with attention and concentration, processing information slower, and/or issues with problem solving, and organizing. For most, these issues will be mild to moderate. However, for a small percentage cognitive impairments can become severe and impact daily living.

Individuals can have many reactions to cognitive changes: embarrassment, frustration, depression, and/or anger. They may choose to ignore or minimize them.

Keeping control, but asking for help

I am currently working with Joe, a 55 year old man with MS, who wanted to apply for funding to have a stair lift installed in his house. Always independent, it was hard for Joe to ask for help. Despite offers of help from his friends, Joe insisted he could manage the application on his own.

Several weeks later, Joe had not completed the application and had lost one of the documents. It was difficult for Joe to admit he was struggling with the paperwork he could once do without help. Before offering help, I made sure Joe knew he would still be the decision-maker and have control over this process. Once we agreed how to work together, we were able to complete the application and approve his request without further delay.

Being aware of cognitive changes

woman with MS making decisions — ©2010 National MS Society

Some possible signs of cognitive changes include: poor follow through of agreed upon action items; forgetting details of conversations; missing pre-scheduled appointments; etc. The impact can be far reaching, ranging from an inability to balance a checkbook to remembering to take medications to missing a deadline at work.

If unaddressed, cognitive impairments could lead to home safety issues, jeopardize a person’s employability and/or ability to live independently. Some people with MS fear they will be fired if co-workers learn about their cognitive changes, and they leave work prematurely. In other cases, family members may question the person’s ability to manage on their own or want to take away responsibilities.

A role for family and friends

Like other invisible symptoms, it may be easiest to deal with the issue once it’s out in the open. Engaging family and friends and educating them about MS may be the biggest strategy a person can implement.

Trying to support a person without knowing what kind of help they truly need is an uphill battle. In working with Joe, I didn’t know if he was facing challenges with reading the application, filling it out online, coordinating bids from contractors, or paying the balance.

In further conversations,, I learned he was overwhelmed by the process and struggling with organizing the supporting documents that were required to apply for financial assistance. He needed assistance breaking down the application in simpler steps and a plan for addressing each step. Once we created that plan, Joe felt less stress and successfully completed the application.

There are strategies and treatments options that can be explored to help manage these symptoms. Addressing cognitive issues may include rehab services, assistive technology, organizational strategies, and medication. The National MS Society has further information on cognitive resources on our website and in print.

I hope you will join us again next week when we look at the impact of invisible symptoms on caregivers.