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October is Down Syndrome Awareness Month

Thank you to Anne Hollis and her family for creating another fantastic video for us to share.


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What is a Waiver?

The following is a guest blog post by Kokua Network contributor Heather Johnson.

“Waiver” is a word that is bandied about a lot in the Intellectual Disabilities/Autism Services field. Waiver is actually short for Medicaid Home and Community-Based Waiver Program. When the government originally stepped in to provide funding for individuals through Medicaid, people were only being served in state-run institutions and similar centers. The waiver was created so that the federal government could “waive” the Medicaid rules for institutions and use those funds to provide services in the home and community instead.

Waivers are comprised of state and federal dollars. The contributions are not exactly even, not consistent across states and are adjusted each year depending on the budget. In Pennsylvania, the majority of services for individuals with an intellectual disability are funded through two types of Medical Assistance. Intermediate Care Facilities for Person with Mental Retardation (ICF/MR) are private or state-run institutions that are entitlements and cannot be capped or subject to waiting lists, although there are criteria for eligibility. Home and Community-based Waivers support people in their homes and/or the community. In Pennsylvania, there are two types of Home and Community based waivers, the Consolidated and the Person/Family Directed Services.

The Person/Family Directed Services Waiver, or P/FDS, is capped annually at $30,000. This is by far the more common waiver, and is generally used to provide day supports and transportation to individuals once they have aged out of the school system. Every year, the state government votes on a budget that allots a certain number of P/FDS waivers to graduates, called the Graduate Initiative. Most people with P/FDS waivers live at home with their families or on their own in the community.

The consolidated waiver is uncapped for individuals, meaning there is no top limit to the amount of funds available to pay for services. However, the statewide cost cannot exceed the cost of providing the same services in an ICF/MR. Therefore, there are far less consolidated waivers available for individuals and the waiting list is much longer. Consolidated waivers usually are used for individuals who live in a Community Living Arrangement (CLA or group home), Life-sharing, have intense medical needs or any combination of services that cannot fit under the $30,000 P/FDS cap.

There are many more waivers available to individuals depending on their diagnosis and specific need. For a comprehensive list of waivers available in Pennsylvania, you can visit Each waiver has different criteria and is designed to provide different services depending on the circumstances of the individual. The application also differs depending on the system providing the funding. Supports Coordination services are available once a person is registered with the county to help individuals and families navigate the process.

The unfortunate reality of the waiver system is that there are usually not enough funds to provide everyone with everything they want-we hope to provide individuals what they need to remain healthy and safe. However, there are many people (supports coordinators, providers, community resources, etc) who will help you advocate for yourself or your child in order to get access to funds. Waiting lists vary depending on the county, funding stream and application process, so it is always a good idea to look ahead into the future and be prepared early to get access to services.


Heather Johnson is a Supports Coordinator Supervisor at The Arc Alliance, a nonprofit organization supporting families and individuals of all ages with developmental and other disabilities. In addition to her personal experience as a family member of those with special needs, she has been working for 18 years in all areas of the special needs community. Heather is one of the guest bloggers who will periodically post information for Kokua Network members.


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Kokua Spotlight: Special Needs/Adaptive Gymnastics

In order to help our members find useful resources within the community, we will occasionally use this blog space to highlight organizations and individuals that are working to make a difference in the lives of individuals with special needs.

In this first installment of our Kokua Spotlight series, we are featuring a Special Needs/Adaptive Gymnastics program at the West Chester Area YMCA Youth Program Center in West Chester, PA. We discussed the program with its founder, Donna Watters, who is the Gymnastics and Dance Director for the YMCA.

Donna has been teaching gymnastics through the YMCA since 1982. She directs programs for gymnasts aged 18 months to 18 years, including instructional classes, competitive teams, and specialty programs such as recreational gymnastics, tumbling/acrobatics, and special needs/adaptive gymnastics.

The special needs gymnastics program was a longtime dream of Donna’s, whose cousin had been a Special Olympian. In addition, one of the gymnastics program coaches, Heather Jones, has a sister who was a gymnast in the Special Olympics. Donna and Heather wanted to start a program specifically for special needs gymnasts at the West Chester YMCA, and the opportunity came when the YMCA challenged directors to come up with ideas for new programs. The top idea would be awarded a seed grant. Their idea won, and they were awarded the grant. The first session of the Special Needs/Adaptive Gymnastics program was in the Fall of 2013.

The class benefits from a very small student-teacher ratio. Typically, there is one teacher for two students, but sometimes the ratio has been one-to-one or one-to-three, depending on the level of student need.

The instructors are chosen because of their own educational, personal, and career backgrounds. Donna’s description of her coaching staff reflects her pride in their diverse backgrounds, “Miss Jen is a Phys. Ed/ Special Ed graduate of Penn State and had past experience working with her mother teaching special needs exercise classes. Miss Haley will be graduating in December with her degree in Special Education. Miss Heather is graduating this weekend with her degree in occupational therapy and had been a long time Special Olympics coach at the Hatboro Y,” she explains. She also noted that Heather also has a sister who is a special needs gymnast.

According to Donna, “much of what the staff has learned is that it’s a week-to-week, student-to-student learning experience,” and that although the coaching staff has plenty of textbook knowledge, “this experience has taught them as much or more than learning in the classroom.”

Prior to beginning this program, Donna and the other coaches worked with many special needs children in the Y’s other gymnastics programs. Those experiences are part of the inspiration behind the special needs program. When discussing the special needs students in those classes, she says, “they have done well and the coaches have really enjoyed it, but we wanted to be able to spend more time with them to make sure they were getting everything they needed.” Donna acknowledges the value of inclusion programs while still advocating for the importance of adaptive programing as a place where those kids “could really shine” when given “the opportunity to reach their full potential” with specialized instruction.

In particular, she feels that the Y’s special needs/adaptive program has fostered friendships and a sense of community among the participants, saying, “The greatest accomplishment has been watching them become a team. The low ratio allows them do their own thing or go their own way. But the goal was to get them to become a small group and to travel to each piece of equipment together. This began happening midway through this year and it was such a sense of accomplishment for the coaches.” She has also observed another important component of teamwork: “I’ve also seen the children start to take ownership of their program and I have seen some of them providing a little leadership to the others…they listen to each other and trust each other.”

Donna says that the program has been received very well and that the Y branch has been supportive of the small program. “I warned them that because of the very small nature of the class, the rewards and benefits may not seem huge, but they have learned that everything that happens in that class is huge and that we enjoy celebrating every success.”

Donna concludes, “We love having this program and would really like to see it grow…We also want to thank the dedicated students and their parents who began this with us and have really helped us to learn and grow!”


The Special Needs/Adaptive Gymnastics Program featured here is offered at the YMCA of Greater Brandywine’s Oscar Lasko Youth Program Center in West Chester, PA. For more information, or to register for the program, contact Donna using the information below:

Donna Watters
Gymnastics and Dance Director
Oscar Lasko Youth Program Center
1 E Chestnut Street
West Chester, PA 19380
610-696-YMCA (9622) ext 2802


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Basketball Star Asks Classmate with Down Syndrome to Prom

Have you seen this story out of Kentucky?


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Services Throughout Life: A Guide to Getting Started

The following is a guest blog post by Kokua Network contributor Heather Johnson.

In an ideal world, a child’s case manager and therapists would remain the same from the very first diagnosis until retirement. It’s frustrating to have to get a person reassessed and explain that person’s story, needs and progress to a new person at every new phase of life. Unfortunately, funding streams change as your child ages. Knowing where to begin is sometimes the hardest challenge. This blog is in no way a comprehensive guide to all of the service options available to you, but rather serves as a jumping off point; a place to begin.

Birth-3     Early Intervention
When you start to suspect your child might need some additional supports, the first thing to do is get him or her assessed. Your family doctor is a good place to start, however, you can also go through your county Mental Health/ Mental Retardation (MHMR) department. This assessment will determine what services your child needs, such as occupational therapy, physical therapy, speech/language support, hearing and vision support, and behavior services. Identifying your child’s need early and beginning services at this age is crucial; many symptoms and characteristics of many disability diagnoses can be alleviated or reduced if they are treated early.

Age 3-5     Preschool
After your child has aged out of early intervention but before he or she has started kindergarten, services are accessed through your county’s intermediate unit if the child has a diagnosis of Intellectual Disability. The intermediate unit can help your child continue the services they had in early intervention, as well as re-assess to see what needs have been met and what still needs support.

Not all children who are eligible for services in Early Intervention qualify for preschool supports, so getting a new assessment at this time is critical. If your child does not qualify for services through the intermediate unit but you still feel supports are necessary, don’t give up! Most qualification decisions can be disputed, or services may be funded through private insurance. If you hit a road block here, reach out to your local advocacy group for help.

Age 5-21     School
Once your child is in school, the district is required by law to meet his or her instructional needs, whether it is one of the services listed above, or others such as adaptive equipment, specialized instruction, or placement in a private school. Unfortunately, it can sometimes be a fight to get these services in place. Educational advocates are available to help you navigate through any problems, if necessary.

If your child has an ID diagnosis, another resource for you now is supports coordination services,. To register with the county for these services, call the intake specialist. You’ll have to meet with the specialist, provide documentation, and choose your supports coordinator, who will help you to create your child’s Individualized Support Plan. Although the school district is responsible for providing services, your supports coordinator can help you find things like activities, summer camps, support groups, advocates, and in some cases help with funding assistance.

If you don’t choose to register your child with the county during elementary and middle school, please do so by the time her or she turns 18. The better the county is aware of your situation post-graduation, the more likely your child is to receive funding, and your supports coordinator can help you through the transition from school to adult life.

21 and on     Adulthood
Once your child turns 21 her or she is no longer entitled to any services. The state and federal government have funding programs, called Waivers, to help pay for services your child will need to lead a normal life, such as day programs, residential placements, in-home supports, transportation and respite. These funds are allotted based on need, and the availability of funding will change based on government officials, number of people applying, etc. Financial qualifications need to be met to be eligible for these funds, including receiving medical assistance and having assets below $2,000. Your supports coordinator will help you apply for funding and set up services.

It’s a long and frustrating road to travel, but please know you are not alone. We are a strong, well-connected and knowledgeable community; help is always available to those who need it. If you need individual assistance or have further questions, you can always contact me, Heather Johnson, from The Arc Alliance, at 610-324-8307 or


Heather Johnson is a Supports Coordinator Supervisor at The Arc Alliance, a nonprofit organization supporting families and individuals of all ages with developmental and other disabilities. In addition to her personal experience as a family member of those with special needs, she has been working for 18 years in all areas of the special needs community. Heather is one of the guest bloggers who will periodically post information for Kokua Network members.

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Remember Us?

Hey readers, remember this blog? We know it has been a long time since you’ve heard from us. Well, there’s a reason for that. Although we haven’t been posting much blog content lately, we’ve still been very busy.

Over the past few months we have been working on how to make this website and blog more useful to you, our readers and members. We’ve teamed up with some other folks with the same goal we have: to help put all of the information Special Needs families need in one place. And we are thrilled to let you know that we have BIG THINGS in store for this site.

First, start expecting more blog posts. But that’s not the big news—the big news is that we have a whole team of guest bloggers and you are going to love them! Behavioral experts, teachers, coaches, case workers, and more—all have agreed to share their insight and wisdom with you right here.

Expect to see regular blog posts on a variety of topics, all of it useful information for families like yours.

In addition, we are going to be posting more updates on our Facebook page—so if you haven’t “liked” us already, do it now! We promise not to fill your news feed with junk—just important updates you need to know.

And, for those who are registered for our E-newsletter, we’ll be sharing more info through email, too. Don’t worry about your inbox getting flooded, though—you will only hear from us once or twice monthly. We know you are busy and you don’t need to be overwhelmed with junk mail, so we aren’t giving your address out or abusing it in any way. So go ahead and register for our E-newsletters if you haven’t already—you’ll be glad you did.

And, please—if you know of a friend or family who could use this information, tell them about us! Remember, we are here as a free resource for you—so spread the word!

Enjoy the start of spring—and we hope to see you back here again, very soon!

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Play Ball!

Got Special Needs? Play Ball!

My special needs kid plays baseball. He also takes gymnastics and swimming, and plays soccer.

Years ago, I never would have believed these things could be possible.  It was all we could do to get our typical kids to hold their own in some of these sports. How, then, is it possible that my special needs son can do these things?

It turns out, there are programs for kids like him.

It started with soccer. Someone told me that they heard about a free soccer league for special needs kids. We decided to try it out—I mean, it’s free, right? If it doesn’t work out, no big deal.  The thing is, it worked out. To be honest, he doesn’t get much out of the games. But the practices? He loves them. However, I suspect that his favorite part is the snack at the end.

Next, we tried baseball. Again, this is a league entirely for kids of all ages with some sort of special need. Some games go well, some don’t. However, he’s out there, playing, wearing a uniform, and, of course, getting a snack at the end.

Then we tried swimming. He had taken lessons when he was younger. But when our other kids joined the swim team at our local pool, I thought I’d ask if anyone there could give our son some lessons. Their response? Just sign him up on the team! I was incredulous. I again explained that he would never compete, and that he would take full one-on-one supervision. Again, they insisted that I just include him in regular swim team practices. And so I did—and he was included in all team activities that he was interested in, but never forced to compete in a swim meet.

Next, we learned about a Special Needs gymnastics program at the local YMCA. On Sunday afternoons, in a near-empty, fully-equipped gymnastics training facility, the instructors work with him on the bars, tumbling, and—his favorite—the trampoline. He loves it.

In the past few years, I’ve learned some important things.  The families of special needs kids are awesome. On the soccer field and baseball diamond, I see men, women and kids who are absolute heroes. Together, they cheer on their kids and siblings, helping each other when necessary, and laughing together at all of the many things that can go awry on the field. Nowhere else have I seen such shining examples of sportsmanship and camaraderie. A kid and his walker fall to the ground during a soccer game and we all hold our breath; then we let out a group cheer when he pops back up grinning and giving his coach the thumbs-up sign. We all cheer “Go!” when a little boy hits the ball off the tee and starts running for first base, then yell “stop!” when the kid decides to just cut across the center of the field, stripping off his t-shirt in his excitement. These families all share in each other’s joy each weekend—for one glorious hour we are all just playing in a field. If you have never done so, check out your local soccer or baseball league’s Challenger team. If you have a kid who would qualify, I encourage you to join the team. If not, do yourself a favor and go watch a game. It will be the most uplifting, heartwarming thing you do for yourself all week.

I’ve also learned that there are many people who, despite not having special needs kids of their own, will bend over backwards to accommodate our kids in any way possible. Whether they are teaching gymnastics or swimming, or encouraging a special needs kid to join the ‘regular’ team, these people take on our challenges as their own. It is people like this who regularly restore my faith in humanity. The best part is the example they set for the other, ‘typical’ kids. Every time a coach takes on the challenge of working a special needs kid onto the team, every other kid on the team learns from the coach’s example of inclusion and good sportsmanship. This is how we build acceptance and inclusion, and how we develop young athletes into young men and women with good character.

Tell us about your experience with sports and other activities. Have you found something that ‘clicked’ for your kid? Has a special coach or mentor gone out of his or her way to include your child? Have you ever cheered at a Challenger baseball game? Tell us in the comments section below!

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The R-Word

We have a very special video to share with you today. Today, March 5, is r-word day, and our friends the Hollis boys have made another fantastic video to “Spread the word to end the word.” They have shared the video with our members and readers and we think you’ll love it just as much as we do.

Check it out!

Also—if you haven’t seen the Hollis boys’ first video (the one that swept the nation and ended up being carried by news and video sites all over the country), here it is:

For more information on the r-word campaign (and to take the pledge to “Spread the Word to End the Word”) click here:

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5 Keys To Starting a Local Support Group


After receiving a diagnosis that can either affect yourself, your child, your spouse or a parent, it is a life altering experience. What to do next can be overwhelming. A good place to start can be a local support group.  A local support group is a community of individuals who meet together from time to time to discuss, listen and to become more familiar with a particular area of need. Local support groups are varied from so many subjects that finding the right one for your need, can be really simple or difficult.

If there are no local area support groups in your area, perhaps you have decided there is a need in your community and you would like to start one. Below, you will find 5 keys to starting a local support group, for the need that you are in search of.

  1. Is there a need?   How many other people in your community do you know, who are going through the same difficulty that you are? Have you heard of others who have suggested they are in need of advice or support? Checking with state agencies, that fit your need can be a wonderful resource. They can help you find out if there are any other local support groups in your area. They also, may have a database of individuals who are in the same need as you are, who can help you with the start up.
  2. Time-  How much time are you able to put into a support group? In the beginning stages of planning it may seem like you are spending a lot of time getting the support group built up. Anywhere from one to five hours a week can be spent on launching a newly local support group. However, once you get things underway, an average of two to three hours a month is typical time spent on a support group.
  3. Volunteer-  You may already have several friends who share your same need for support. Spend time talking with them about the idea of a local support group. Enlist your friends to help in the process. If you choose to name officers, these start up volunteers are those who will more than likely take these positions. Find volunteers who are willing to donate their time in different areas of the support group. The volunteers who share your same interest in a successful group will help you with your goal of achievement.
  4. Location-  A central location in your community is the best place to serve your support group. You want a location that is easily available to all who are interested in coming. There are so many options for a location, but you will need to consider what is best equipped to serve the need you are looking for.  If your need is small and intimate you may want to consider your or another volunteer's home. If your support group will be providing amenities, like childcare, than you will need to look for a setting that will be able to provide an additional area to accommodate that need, like a church or a recreational facility.
  5. Advertising-  There are many ways to advertise freely to your community about your support group. Utilizing all of your free resources is a great tool in achieving a successful turnout. Below is a list of free ways to advertise:
    1. Word of mouth......tell everyone you know!
    2. Social media......create an event on your Facebook wall of page.
    3. Local newspaper......most local newspapers will advertise support group information for free.
    4. Flyer's......create a standout flyer with all of your groups information (time, location, amenities, topic etc) and pass out to schools, churches and other local business. Many of these will see approval first before putting up or sending out.

Once you follow these steps, sit down with your volunteers and discuss what topics would be beneficial for your needs. State and national agencies are a great resource to help you with topics and how to present them. Remember a successful local support group is rewarding in helping others, as well as yourself, to find the goal of what you all are in search of.

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529 and UTMA Accounts and Government Benefits

529 and UTMA accounts for individuals with special needs

Keeping up with Social Security rules and regulations can be a riddle wrapped in an enigma shrouded in mystery.  The worst situation is when you get conflicting advice from two people and then a third opinion from your local Social Security office.  Its important to give truthful facts when dealing with your local Social Security office and report all income and assets.  A tricky situation is often presented when dealing with UTMA (Uniform Transfers to Minors Act) accounts and 529 Plans and disability.  A typical situation regarding these assets looks like this:

Tom is 18 and has downs syndrome. His grandfather set up a UTMA account for him when Tom was 2 years old and the account balance is $15,000.  Tom's grandmother also created a 529 plan when Tom was young and the balance has grown to $35,000.  Tom's parents are going to apply for SSI and Medicaid (or Medical Assistance) for him and they need to know what to disclose as an asset to meet the means test requirements for the benefits.  They should be truthful and disclose both assets but ultimately he has a problem on his hands.

First, lets understand what a 529 Plan entails.  529 Plans are education savings plans operated by a state or educational institution where the beneficiary can use distributions for post-secondary education expenses at a qualified educational institution.  529 Plans get preferential tax treatment under Federal income tax rules and can be created for a beneficiary at any age.  Some states allow for income tax deductions for contributions to 529 Plans as well.

Second, an UTMA account or a Uniform Transfer to Minors Act account (also called UGMA or Uniform Gifts to Minors Act accounts) is established to safeguard monies gifted to a child that has not yet reached the age of majority.  A custodian oversees the funds until the child can receive the funds.  When the child can receive the funds depends on state law.

Lets go back to our situation.  If Tom applies for government benefits, the 529 plan would not be seen as a resource to Tom.  The plan is owned by Tom's grandmother and Tom has no right to withdraw funds from the account.  Tom's grandmother could always change the beneficiary on the plan.  Therefore, the 529 plan would not be considered a resource of Tom's and would not cause him to become ineligible for government benefits.  What would be important, though, is making sure that the distributions from the 529 were used exclusively for educational expenses (which do not include food, clothing or shelter) so that distributions are not counted as income for Tom.

UTMA (or UGMA) accounts are treated different by your Social Security Office.  The UTMA accounts are not counted as a resource until the child reaches the age of majority.  Again, state law will determine when the account will be counted as a resource but it will eventually be counted and could cause the child to be ineligible for government benefits.  Therefore, UTMA/UGMA accounts should be addressed sooner rather than later and you should always contact an expert concerning benefits in your state.    It may be the case that the child starts receiving government benefits  and only later when they reach a certain age (under the state law of majority) does the UTMA account cause the individual to become disqualifed for benefits.  Since the assets held in the UTMA account are likely to cause issues, spending it down or a payback special needs trust may be option to consider.  (see our Payback Special Needs bootcamp here)

Things to remember:

  • Always be truthful with your local social security office.  But it always makes sense to sit down with your financial advisor or your attorney before you file for benefits for your child to see if there are any assets that may be counted as a resource and cause your child to be ineligible for benefits and do something about it.
  • 529 plans offer the ability to save for educational expenses with tax benefits.  The account owner, though, should be cautious in how she applies distributions for educational expenses to ensure that it won't be considered a resource.
  • UTMA accounts or UGMA accounts should be addressed before the individual with special needs applies for government benefits.  It is possible that the monies could be spent down on the special needs individual or a payback special needs trust could be done.  Always consult with an expert.
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