Ricoh Technology Showcase and Arc fundraiser Oct. 8

Ricoh is holding its Technology Showcase next month in Plymouth Meeting, and they were generous enough to include a fundraiser for The Arc as part of the event. Come out and see Ricoh technologies and support The Arc and developmentally disabled. Here are the details:

WHAT: Ricoh Technology Showcase and Arc fundraiser

WHEN: Oct. 8 from 10 a.m. to 3 p.m. Lunch is at noon.

WHERE: Doubletree Plymouth Meeting Hotel
640 W. Germantown Pike
Plymouth Meeting, PA 19462

RSVP: By Sept. 30 to jessica.herren@ricoh-usa.com or 610-650-3839

 

Flea market and fun day Sept. 26

The Arc is holding its semi-annual flea market and fun day in a few weeks, and all are invited. There will be carnival games, prizes, raffles, food, and lots of stuff to buy! We’re also looking for volunteers and donations to benefit Arc Advocacy Services and Marc Children’s Services.

We’re holding it Saturday, Sept. 26 from 9 a.m. to 3 p.m. at our location, 3075 Ridge Pike, Eagleville, PA 19403.

Flea market spaces are $15 for vendors, crafters, and neighbors. (Please bring your own table.)

We are accepting donations of children’s toys, clothing, books, and small household items for the company table. These items can be dropped off at the receptionist desk at our office.

For more information, call Charleen 610-265-4700 ext. 217 or e-mail cmcgrath@marcpa.org.

 

Dads of disabled children, consider joining Marc Fathers’ Group

We have a lot of support groups here at The Arc, and one of them is the Fathers’ Group. If you’re a father of a developmentally disabled child, consider joining the Marc Fathers’ Group.

Every other Saturday, dads brings their children to The Arc. It’s a unique opportunity for dads to meet other dads and kids, and share their parenthood experiences of having a child with a disability.

This peer support can help dads better cope with the challenges and stress of raising a disabled child. You’ll learn more about your child’s disability, and new ways and tools to help him/her and your family cope. Whether it’s discovering The Arc’s services, learning about transitions to the Intermediate Unit (IU), or just unwinding, dads and kids enjoy their time spent at The Arc.

The Fathers’ Group also gives dads other opportunities to bond and spend quality time with their child. You can participate in at least three father group activities over the year. This year, we’re planning a fathers’ picnic, train ride aboard the New Hope and Ivyland Railroad, and a hay ride festival at Linvilla Orchards. And meanwhile, it gives Mom some free time to relax and have time to herself. ;)

The Father’s Group usually meets every other Saturday from 10 a.m. to 12 p.m. at our Eagleville office located at 3075 Ridge Pike, Eagleville, PA 19403.

If you want to learn more about the Fathers’ Group, the meetings schedule, or join, contact Mike Marsh at mjmarshpa@k-mdiversified.net.

Also, be sure to check out other Arc support groups on our Web site, including Children’s Services, Feeding Group, Down Syndrome Play Group, Sibling’s Group, and Parent’s Group.

 

All aboard New Hope and Ivyland Railroad for a party train ride!

There’s still time to RSVP for The Arc’s next Father’s Group outing. We’ll be hitting the New Hope and Ivyland Railroad on Saturday, Sept. 12 for an hour-long tour around historic Bucks County. But this isn’t just any family tour. We booked the party package, with an entertainer who plays the banjo, tells stories, and reads to the children. Pizza, cake, ice cream, and juice will also be provided.

Once you park your car at the station, the train takes you through the rolling hills and valleys of historic Bucks County. We’ll be riding either a restored 1920s vintage passenger coach, antique bar car, authentic steam locomotive, or one of the historic diesel locomotives. The train will travel along the same historic route that was filmed in the 1914 movie series Perils of Pauline. It returns you back to your original station.

The train ride is being funded by the Dolfinger-McMahon Foundation. Thank you!!! If you’re interested in coming aboard, see the details below. But hurry — we can take 40 people, and 33 have already registered.

WHAT: Father’s Group outing aboard the New Hope and Ivyland Railroad

WHEN: Saturday, Sept. 12 from 11 a.m. to 12 p.m. Please arrive 30 minutes early.

WHERE: New Hope and Ivyland Railroad
32 West Bridge Street
New Hope, PA 18938
Map

PARKING: On site parking is available at the train station. The normal fee is $15 per day. If you tell them you are with Marc Fathers’ Group for the party ride, the cost will be $10 per car. Limited street parking is also available.

COST: Free, unless you are paying for parking.

RSVP: No later than Sept. 7th to Charleen at cmcgrath@marcpa.org or 610-265-4700, ext. 217. Space is limited to the first 40 attendees.

QUESTIONS: Visit the New Hope and Ivyland’s Web site or contact Charleen at cmcgrath@marcpa.org or 610-265-4700, ext. 217.

 

Free seminar: Special needs trusts and what they can do for you

For the uninitiated, special needs trusts are trusts designed specially for the developmentally disabled. They enable a disabled person to have a trust held in their name to ensure they receive whatever benefits are intended for them. These can include Supplemental Security Income (SSI), Medicaid, vocational rehabilitation, subsidized housing, and other benefits based upon need. Special needs trusts can help beneficiaries avoid losing access to their essential government benefits.

A special needs trust can be a valuable way to protect your disabled family member. But there’s much more to them that a simple piece of paper and a signature. That’s why The Arc is hosting two free seminars on Aug. 26 to educate those interested on special needs trusts.

The seminars are part of the Community Seminars Program, which is a free public service offered by Bradley Law to the communities of Southeastern Pennsylvania. The Community Seminars Program provides information sessions on topics of interest to the public with a direct focus towards individuals with disabilities and their families.

Presenting will be Patrick J. Bradley, Esq., who has been worked in the fields of developmental disabilities and behavioral health for over a decade in Southeastern Pennsylvania.

Here are more details on what each seminar will cover. You can attend one or both. Details on how to register follow.

Session 1: All about Special Needs Trusts
10 a.m. – 12 p.m.

What is a Special Needs Trust? Every single day many people in Pennsylvania are forced to choose between “spending down” their money and losing their government benefits. For many people this happens when they apply for Medicaid or Supplemental Security Income (SSI). For others already receiving these benefits, they have to “spend down” just to be able to keep their Medicaid and/or SSI. Find out how qualified individuals can save their money and get government benefits too!

Come to this seminar to learn about:

• What a Special Needs Trust is.
• How they work.
• Who can benefit from one.
• Which one may be right for you.
• How to get one.

You’ll also learn the differences between:

• Common Law Trusts
• Payback Trusts
• Pooled Trusts

Session 2: Basic Trust Administration
1:30 p.m. – 3:30 p.m.

Can I manage the Trust myself? That answer could be yes! Do you want to help your loved one but aren’t sure you want to place their financial well being in the hands of strangers? You’re not alone. We’ll explore the crucial role of a Trustee as an administrator of the special needs trust. Come hear about the pros and cons of trust administration and see if “going it alone” as a Trustee can work for you.

You’ll learn the big differences between:

• Private Trustees
• Non-Profit Trustees
• Bank Trustees

Find out which is the best fit for your Beneficiary. At this seminar we will also cover how to:

• Create and fund the Trust.
• Complete initial paperwork.
• Do basic Trust management.
• Meet reporting requirements.
• Make disbursements, and more.

By exploring the fiduciary obligations of a trustee to both the Trust and the Beneficiary, you’ll have a better picture of what’s required to perform as Trustee.

WHEN: Wednesday, Aug. 26, 10 a.m. – 12 p.m. and 1:30 p.m. – 3:30 p.m. Please arrive 15 minutes prior to session to check in.

LOCATION: The Arc of Montgomery, Berks & Bucks Counties
3075 Ridge Pike
Eagleville, PA 19403
Visit www.marcpa.org or call 610-265-4700 for directions.

COST: Free.

REGISTER: Online at Bradley Law. Seating limited to 45 people per session.

 

Aug. 26 rally in Media to help end state budget impasse

Pennsylvania continues to struggle to pass a state budget, and rallies have been held around the area to put pressure on the legislature, including in Philadelphia and Media.

Another rally will be held in Media on Wednesday, Aug. 26 at noon at the Media Courthouse. All are invited to attend to prompt legislators to quickly pass a budget that adequately funds essential services for the developmentally disabled, children, seniors, and others that depend upon services provided by area nonprofits.

The rally will highlight the challenges and problems nonprofits are facing without a budget in place. For The Arc of Montgomery, Berks & Bucks Counties, it is not getting paid for Early Intervention services it’s providing some counties.

Many nonprofits are also laying off staff and cutting services. Worse, tens of thousands of needy Pennsylvanians could lose services they rely on, and thousands of workers could become unemployed.

At the rally, the United Way of Southeastern Pennsylvania will also present the results of the survey it’s doing to learn more about these ramifications of the budget impasse. If you are a nonprofit worker, today is the last day to fill out the survey and share how you are being affected.

 

Nonprofit workers: How is state budget impasse affecting you?

The lack of a state budget is having a devastating impact on nonprofits throughout Pennsylvania, including The Arc. United Way of Southeastern Pennsylvania has sent a survey to 11,000 nonprofit agency workers asking for information on the impact of the state budget impasse on their operations. If you are a nonprofit worker, please fill out the survey and share your thoughts and opinions! But please act fast — today is the last day for responses.

 

Action alert: Save budget for MR and early intervention programs

Pennsylvania’s funding for community mental retardation (MR) and early intervention programs is on the chopping block. The budget for fiscal year 09-10 is still not in place, as the Senate waivers on whether to cut these programs from the budget or not. We need your help in urging your Senator to maintain the budget for these programs.

Click over to The Arc’s Web site, where you’ll find a pre-composed message to send to your Senator. All you have to do is enter your contact info and hit send!

Balancing the state budget requires tough choices. But community MR and early intervention programs for infants and toddlers are publicly funded. The waiting lists for services are very long. The last thing these programs need is a budget cut.

More importantly, Pennsylvanians with developmental disabilities and their families depend on these programs. Please ask your Senator to find another way to balance budget. Learn more about the issue and write in today.

 

Taking to the water for autism therapy

Justin Etherton is a swimmer in the Montgomery County Swim League in Maryland. He’s also autistic. But for him, swimming has been a crucial therapy because it provides him a social outlet, and an opportunity to set goals and achieve them. The Washington Post covered his story with a photo essay, showing his determination and pride when he takes to the water. Click over to view it. Just goes to show how the benefits of sports can go beyond physical fitness, and extend to mental wellness.

 

Pics from our Mitch Herman Golf Tournament

Some pictures to share with you from the Mitch Herman Memorial Golf Tournament we held last month. Here’s one, and see the rest on our Flickr page.

 

Thanks to Times Herald for covering Knights of Columbus fundraiser

If you caught the June 25th issue of Times Herald, you might have seen the article covering board member Mike Marsh receiving the fundraiser check from the Knights of Columbus. Thanks to the paper for featuring us!

 

Action alert: Support positive measures to correct bad student behavior

If you have a child in school, you might want to pay attention to a new federal bill called the Positive Behavior for Safe and Effective Schools Act (H.R. 2597). It would let state and local education agencies use federal education funds to increase the use of school-wide positive behavior support (SWPBS) for all students — including those with developmental disabilities.

What’s PBS? It’s a positive approach to promote good behavior among all students. Almost every K-12 classroom has its share of misbehaved kids. Schools typically take punitive measures to correct students’ misconduct (detention, etc.). But that can often ignite the rebel inside, and cause kids to continue misbehaving.

PBS, on the other hand, creates and maintains a safe and effective learning environment by clearly teaching students what behavior is expected of them. They are rewarded for good behavior and making good decision. PBS has been shown to decrease the number of discipline referrals, increase academic performance, raise student attendance, and improve school climate.

U.S. Rep. Phil Hare introduced the Positive Behavior for Safe and Effective Schools Act in the House of Representatives. The bill doesn’t require schools to use PBS. But many schools want to implement it, and don’t have the funds to do so. This bill is a step in the right direction. But now, we need your support too!

No Pennsylvania representatives are co-sponsoring the bill. Please, call your federal representative and tell them you want them to support and co-sponsor the Positive Behavior for Safe and Effective Schools Act. It can mean a more positive, healthy, and productive learning environment for your child.

You can find out who your representative is and how to contact them by visiting the House’s Web site.

You can read the full text of the bill at the Library of Congress’s Web site.

Thank you for your support!

 

Rest in peace, Rosa B.

Many individuals over 65 years of age, with and without a disability, have no living or involved relatives. When an individual’s judgment is affected, appropriate assistance is of utmost importance to assure that outcomes of life-affecting decisions are properly considered.

But where will this assistance come from? Here at The Arc, our Advocacy Services identifies service needs and gaps and seeks to find solutions through other entities or, when necessary, by directly addressing the need.

I bring this up after an unfortunate event. Recently, Rosa B. was found unconscious on the floor of her room in a personal care boarding home, and was admitted to the hospital. It was later determined that Rosa had a massive stroke.

Over the next few days, the medical intervention team could not improve her condition and there was consensus among her medical team that she was not going to improve and her situation would begin to further deteriorate. For a woman in her 70’s the prognosis was extremely poor. Rosa never regained awareness of her surroundings, and she appeared to be in general discomfort.

The hospital social work staff was contacted to locate next of kin to help establish a course of treatment under the current circumstances. Determining that there were no involved family members, the hospital staff turned to Arc Advocacy Services. We accept guardianship for others when no other persons were willing or available to take on the responsibility for making appropriate end of life decisions.

Once the Court of Common Pleas granted Arc Advocacy Services emergency legal guardianship, Arc staff began consultation with the physicians and medical personnel to develop an appropriate course of treatment. Arc Advocacy staff became the point of contact for Rosa’s treatment team, and was able to sign the required medical release forms and documents to provide specific medical care and comfort for Rosa.

Arc Advocacy’s overall philosophy is to address the needs of individuals who have a disability, and because of it, Rosa and others have support. Where would folks turn if this option was not available?

Rosa recently passed away. The only people who attended her services were the staff from the Arc and the staff from the funeral home. No one should be this alone in life. But it happens. And when it does, The Arc steps in so there is someone there to support them.

Please join us in saying a prayer for Rosa. And if you have questions about Arc Advocacy Services, you can learn more by visiting or Web site or calling us.

 

Former Philly teacher dedicates self to The Arc and developmentally disabled

Our board members all have their own personal reasons for joining The Arc and dedicating themselves to the developmentally disabled. Many have children with disabilities, and they get involved to give them a better life. But in doing so, they become part of something greater: helping bring opportunity and hope to many other disabled people in our area.

It’s an endeavor 35 years in the making for Michele Mailman. She’s one of The Arc’s board members, and we interviewed as part of our Meet the Boards series. Our e-mail Q and A is below, unedited, so you can get Michele’s unvarnished take on how and why she got involved with The Arc, and why it’s important to her. Her story is an inspiration to anyone who’s considering getting involved, and everyone who already is. Enjoy!

Introduce us to Michele Mailman. Tell us a little about who are and what you do.

I have been married to my husband Steve for almost forty years. We have two children, Holly and Scott, and one grandchild, Evan. In 2006 I retired from the School District of Philadelphia after teaching for over thirty years. I found that I missed the kids and my colleagues, so I began substitute teaching the very next semester.

I usually work about six to eight days a month and I only work at the middle school that was my last assignment. I also spend two to three days a week babysitting for my grandson so that his mother could return to work as a speech/language pathologist. My schedule is almost as busy now as it was before I retired.

How did you get involved with The Arc board, and why?

Thirty five years ago, when I was still living in Philadelphia, I was asked to join a fund raising group of women called the PARC Aides who generated money through fundraisers for the Philadelphia Arc. After being a member for a year, my son Scott was born. He was diagnosed with a seizure disorder and developmental delays when he was eight months old.

While the Philadelphia Arc had spun off its infant stimulation programs years before, they were able to help me with my search for programs for Scott. To this day, I am still a member of that PARC Aides chapter that will, sadly, disband at the end of this year.

Twenty one years ago we moved to Montgomery County. I was approached by Ginny Conway to come on the board of the Arc of Montgomery County as she was beginning her presidency. We had known each other well when we both lived in Philadelphia since our sons were enrolled in the same KenCrest early intervention program. I was honored to be asked and felt that I would benefit from knowing more about how the system was accessed in Montgomery County.

Through the years I have been a general board member, chairman of several committees, president of the Foundation Board, and have held several offices on the parent board before assuming the presidency in June 2007.

I have maintained a sustained presence with the Arc because I feel that in some way I am giving back to the agency that has the mission of inclusion of people of all ages with developmental disabilities into the fabric of our general society and to remove barriers that prevent this from happening.

Why are you dedicated to the developmentally disabled community?

My initial reason for dedication to this community would, of course, be my son Scott. As any parent of a child with a disability, I have had my own experiences and have also shared them with others who have enlightened me with tales of their journey in this unique and challenging position.

Because I can look back at the progress that has been made and can envision where we need to go, I will remain involved in the endeavor to make our intellectually challenged community of adults and children gain access to all aspects of life, work and family they deserve.

What are some of your biggest concerns for the developmentally disabled right now?

I am concerned that the financial crisis facing our country will have a negative affect by making the funding needed to maintain and build programs for this community more difficult, and possibly, in some cases, cancel plans for the expansion of supports that are greatly needed at this time. I am afraid that the waiting list will not be addressed in a way that will provide services for families already long in need.

Besides the work The Arc is doing, are you doing anything else personally to help the disabled?

My son Scott lives in the community with two other young men with similar disabilities. Neither has a mother who is alive, and only one has a father, who is in poor health. I have made it a goal to create the kind of home in which I would like Scott to live by meeting regularly with the provider and staff, ranging from the director to direct care staff.

I am committed to request and, sometimes, demand improvements in both the physical condition of the home and the level of care the men receive. In doing this, I hope to improve the lives of all three.

I accompany staff to shop for the other men, make purchases for their rooms, and help identify programs that make their lives more complete. When I decorated and made new purchases for my son’s bedroom, I also made similar plans for upgrading the other two residents’ rooms. They are a family and I am proud that I can serve all three as a mother and a surrogate parent.

What can readers do to help out?

There are many ways people can help. We are always looking for and welcoming people to our boards that have the expertise and knowledge to help us grow. If serving on a board is not your thing, volunteering in activities such as sports and community outings is a great way to interact with people with intellectual disabilities. I believe by doing any of the above, they will feel enriched.

 

See Pottstown Mercury for latest on state budget cuts

Writer Lynn Gladieux put together a follow-up piece in the Pottstown Mercury about the hardship The Arc is facing in light of recent state budget cuts. Thanks so much Lynn for covering our story again!

Click over to her article or turn to today’s issue of the Pottstown Mercury to read about Lynn’s latest interview with Arc Executive Director Paul Stengle. Lynn covers how state money gets funneled through organizations like the Arc, and where some of the biggest issues lie in getting this funding to the developmentally disabled.

 

Knights of Columbus presents Arc with fundraiser check

After weeks of hard work raising funds for The Arc, local Knights of Columbus chapters have gathered all monies raised, and doled them out this week. A big thank you goes out again to all the Knights who helped support The Arc!!

On Tuesday, Mike Marsh, President of Marc Children’s Services, received The Arc’s check from the Knights of Columbus’ Pope John Paul I Council (#7565) at the Visitation Church. Here’s a shot from the event:

 

Happy birthday to The Arc of PA

The Arc of Pennsylvania is 60 years old this year, so we wanted to send special birthday wishes their way. Happy birthday! The Arc of PA created a short video to celebrate the occasion, and you can watch it on their Web site. It features people who have been touched by The Arc of PA, and the difference the organization has made for the disabled in our state since 1949.

 

SB 850 squashed: Funding for waiting list and MR services safe for now

Those receiving or about to receive state and federal mental retardation services can breath a sigh of relief. The Pennsylvania House Appropriations Committee voted down Senate Bill 850 this week. If passed, the bill would have significantly cut funding for services for people with developmental disabilities and their families.

The Arc is breathing a sigh of relief too. Rejecting this bill is an important step in preserving the services we need to support the developmentally disabled. If you take a look at what this bill would have done their well-being and livelihood, the importance of its defeat comes to light. If passed, SB 850 would have:

• Cut $37.72 million from Medicaid-waiver-funded community services, ending services for 550 people.
• Eliminated $12.117 million in state-only funds for county MH/MR programs. Three thousand families would not have been served.
• Cut $15.286 million in state and federal funding for autism services. Up to 50 percent of people waiting for services would not have gotten them.
• Eliminated the emergency waiting list and institution diversion initiative, denying services to 780 people.

You can learn more about the bill and how it would have affected the developmentally disabled community in Pennsylvania by checking out The Arc of PA’s testimony before the House Appropriations Committee in May.

 

Arc mother’s letter to Gov. Rendell: Good things happening since son graduated Early Intervention

We’ve often written about the struggles the developmentally disabled face in Pennsylvania. From funding cuts to lack of equal opportunities, it seems it’s always an uphill battle for those affected by disability. However, there are bright spots amidst the difficulties, and it’s helpful to share them, to keep our spirits up, and know that our efforts to support the disabled are working.

Linda of Montgomery County is one of those bright spots, and she felt strong enough about her story to write it in a letter to Gov. Rendell. Linda’s son is one of the recent graduates of Marc Children’s Services Early Intervention program. In her letter, which she also shared with us to share with you, she describes how The Arc significantly helped improve her son’s development.

She notes three particularly impactful people at The Arc: Connie Vienz, Program Coordinator; Julie Fisher-Pisa, Occupational Therapist; and Shanna Neumann, Special Instructor.

Below is a copy of Linda’s actual letter to the governor. You can click the image to see it enlarged, and read it first hand. (Linda’s contact info has been censored for privacy.)

Linda also thanks others who made a big difference for her son. Her story shows that by working together, we can made great strides in giving our disabled children a better life from the start.

Many thanks goes out to everyone who worked with Linda’s family. And thanks also goes out to Linda, for sharing her story and putting in front of Gov. Rendell to prove that programs like those provided by The Arc are working, and are essential in our community.

If you have a story to share, please feel free to write a letter to the governor or your congressman, like Linda did. Simple actions like that can help show our leaders the importance of providing enough funding to support programs and services for the developmentally disabled. It can make the difference for your family, and others in your neighborhood. We also encourage you to share your story with us here on the blog. We’d love to hear about it!

 

“Building Bridges” archive: How to start and run a parent support group

Parent support groups can be a vital resource to gain insight, find connections, and learn ways to help your special needs child grow and socialize. You might have one in your community and perhaps you’re already a member. If so, you probably know about the benefits of staying active in your parent support group.

But if you aren’t in a group, or if there aren’t any around your home, don’t worry! This is the perfect opportunity to start one of your own. It might sound daunting at first, but remember: Parent support groups are created and run by other parents just like you. All it takes is commitment and a few key steps to successfully start and run a parent support group.

And in our latest episode of “Building Bridges in the Community,” we got the download. You can watch the archived version below.

Moderator Cat West was joined by Camille Desnoyers to discuss how parents can be empowered, and become more active in their disabled child’s education and socialization through parent support groups. Cat helped form a group, the Upper Merion Special Education Parent Resource INterest Group (UM SPRING), and Camille spearheaded the Norristown Education and Advocacy for Children with Differing Abilities (NEACDA).

Both are successful, and you can learn exactly how these two women started their groups and have kept them going by watching the show. Hats off to Cat and Camille! You can also learn more about their groups and how to join by visiting their Web sites:

UM SPRING

NEACDA

The next episode of “Building Bridges in the Community” airs live July 2 at 11 a.m. on BCTV.