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CP State, NYC Ballet bring smiles and moves to people with disabilities

The New York City Ballet (NYCB) conducted a free dance a workshop for children with disabilities on Saturday, July 17 at the National Museum of Dance. The workshop was led by a pair of NYCB Dancers and included choreography inspired by NYCB’s A Midsummer Night’s Dream.

It was great to be back in person after holding a virtual workshop last year! Check out some pictures from the event:

NYC Ballet hosting access workshop on July 17

We are happy to announce that the New York City Ballet (NYCB) will conduct a free dance a workshop for children with disabilities on Saturday, July 17, from 10-11 a.m. at the National Museum of Dance.  The workshop last year was held virtually due to COVID, but this year we are again holding the workshop in person!

This one-hour workshop will be co-led by a pair of NYCB Dancers and will include a warm-up and choreography inspired by NYCB’s A Midsummer Night’s Dream. Modifications and movement options will be offered throughout, and movers of all abilities and their siblings are welcome. Unlike in the past when we’ve had medical/PT/OT “buddies” pair up with our young dancers, for this workshop we will be encouraging a parent/guardian of the participant to join the workshop in offering support for their child.  Click here for more information and to register.

In addition, the Saratoga Performing Arts Center (SPAC) will again offer a limited number of complimentary tickets to either the matinee or evening performance on Saturday. Up to 4 complimentary tickets will be available to each participant.   Information to request these tickets is in the “checkout” section of the registration.

Please share this information with individuals and families that may be interested in attending. 

The Workshop and Ballet tickets are FREE, so we hope to see many of you on the 17th

OPWDD emergency measures no longer in effect

Late Friday, July 2, OPWDD Commissioner Theodore R. Kastner issued the following letter stating guidance documents related to Visitation, Community Outings, Day Services and Staffing Management are no longer in effect. Revised guidance is linked below.

Dear Friends and Colleagues,

As you know Governor Cuomo recently announced that the state of emergency that was in effect during the COVID-19 public health emergency has come to an end.  And while this does not mean that COVID-19 is no longer a threat, it does mean that many of the emergency measures issued by the state and its agencies, including OPWDD, are no longer in effect. It also means that many of the public health-related restrictions that were that were imposed to keep the people we support safe can finally be relaxed.

As of today, guidance documents related to Visitation, Community Outings, Day Services and Staffing Management are no longer in effect.

Below are two new guidance documents which are effective as of today:

Post State of Emergency COVID-19 Guidance for OPWDD Certified, Operated, and/or Funded Facilities and Programs

Revised Interim Guidance Regarding the Delivery of Services Through the Use of Telehealth Modalities by Facilities and Programs Certified or Operated by OPWDD During the COVID-19 Federal Public Health Emergency

We know that this has been an extremely difficult time for the people we support, and the family and staff who support them. Throughout the last year and a half, this agency has appreciated your patience, your advocacy, and your unwavering commitment. We look forward to partnering with you as we get back to the business of resuming many of the long-awaited activities that had to be put on hold during this crisis.

Sincerely,

Theodore R. Kastner, M.D, M.S.
Commissioner

Study: Intensive Therapies help children with spastic CP

 In a landmark research study on eighty-two children with spastic cerebral palsy (CP) on one side of the body, researchers at Burke Neurological Institute, Teacher’s College-Columbia University, and Weill Cornell Medicine learned that two intensive training therapies improved hand and arm function, allowing children to learn new, long-term life skills regardless of how the injured brain had re-wired itself.

The study represents a significant breakthrough in the treatment of CP, the most common movement disability in childhood (cdc.gov). CP is caused by damage to the developing brain before, during or shortly after birth. It affects a person’s ability to control his or her muscles and often leads to impairments in mobility or movement. In children with unilateral spastic CP, one side of the body is most affected.

The study focused on children who received either HABIT (Hand-Arm Bimanual Intensive Training) or CIMT (constraint-induced movement therapy), two upper body therapy techniques that have been found to be effective in teaching new skills to children who have CP. The therapies were given by trained therapy teams during a ninety hour, three-week long “day camp” setting (six hours per day, five days per week). The study demonstrated that both intensive therapies can lead to long-term improvements in hand and arm function in children with CP, regardless of how each child’s brain was wired.

Thirteen-year-old Allie Fowler of Chester, PA, participated in the study when she was nine years old. She was born with CP that affects movement on the right side of her body. “Hand camp was so much fun, and my hand got a lot stronger,” Allie recalled. “Even when things got hard, I kept trying because I knew that this research would help other kids with CP around the world.”
Allie’s mom, Danielle Fowler, also recalled Allie’s progress. “It was amazing to see my daughter’s hand function improve so dramatically during the trial, especially after her progress had plateaued in a traditional occupational therapy program. She was able to master some tasks that she had previously struggled with, and she had a lot of fun while doing it.”
This clinical trial arose from nearly two decades of work on intensive therapies, led by Dr. Andrew Gordon at Teachers College-Columbia University where the treatments were conducted. “Early studies suggested that some children were less likely to benefit from intensive rehabilitation, depending on how their brains had reorganized. This new study proves that assumption wrong,” Dr. Gordon stated.
“The research showed us that the motor system exhibits an extraordinary capacity to adapt,” stated Kathleen Friel, Ph.D., the lab director overseeing the study at Burke Neurological Institute. “We were pleased to finally acquire hard data showing that intensive hand therapies improve a child’s ability to move, play, learn and progress, no matter which type of brain connectivity pattern they had.” Friel, who has CP herself, also noted that the children retained most of their new therapeutic skills six months after the trial.The clinical trial was funded by a grant from the NIH. The complete research was published in the May 2021 issue of Frontiers in Neurology, Volume 12, Article 660780. The full text can also be found on PubMed.

About Burke Neurological Institute (https://burke.weill.cornell.edu):
The Burke Neurological Institute (White Plains, NY) is a non-profit research institute focused solely on the discovery of treatments that repair neurological disability caused by stroke, Alzheimer’s Disease, Parkinson’s Disease, traumatic brain injury, spinal cord injury, and retinal degeneration diseases. The Institute is an academic affiliate of Weill Cornell Medicine and collaborates with leading neuroscientists world-wide to transform groundbreaking research into treatments that help people walk, talk, see and remember again.
For More Information:

Contact: Christine E. Hughes, VP of Advancement, Burke Neurological Institute

Phone: (914) 368-3142 | Email: chh2038@med.cornell.edu | Website: burke.weill.cornell.edu

 

Contact: Kathleen Friel, Ph.D, Lab Director, Burke Neurological Institute

Phone: (914) 368-3116 | Email: kaf3001@med.cornell.edu  | Website: burke.weill.cornell.edu

 

Contact:  Andrew M. Gordon, Ph.D., Professor of Movement Science and Neuroscience & Education, Teachers College, Columbia University
Phone: (212) 678-3326 | Email: ag275@tc.columbia.edu | Website: www.columbia.edu

Governor Cuomo announces end of Temporary Disaster Emergency

Governor Cuomo announced at his press briefing today that the Temporary Disaster Emergency established by Executive Order 202 and subsequent Executive Orders issued in response to the COVID-19 crisis will end effective tomorrow, June 24. This will end the suspensions and modifications of law, and all directives contained in the Executive Orders relating to the State’s Disaster Emergency.
The interim guidance issued by OPWDD and the COVID-19 reporting requirements are not dependent upon the continuation of the state of emergency, and remain in place for the time being. The Federal Centers for Disease Control and Prevention (CDC) guidance requiring masks for unvaccinated individuals, and for all individuals on public transportation and certain other settings also remains in place.
We recognize there will be many questions regarding shifting guidance for our field moving forward. We are seeking clarity on these changes, and will update you as soon as possible. In the meantime, we advise all Affiliates to adhere to the current OPWDD guidance and follow their existing COVID-19 protocols and procedures.

NYDA Workforce Summit draws hundreds

More than 650 people joined key stakeholders from government and provider agencies at NYDA’s Workforce Crisis Summit today.

We discussed the recruitment and retention challenges providers throughout the state are facing, as well as proposed solutions.

Click on the video thumbnail if you’d like to view the summit and feel free to share with your supporters.

CP Nassau kicks off Health and Wellness Campaign

Sharon Rothstein, Director of the Adult Day Services Program at CP Nassau greets Hap P. Waterdrop! As a committee member, Sharon is truly convinced of the benefits of water and took part in the survey on day one!

CP Nassau’s new Health and Wellness program, Wellness on the MOVE! is being implemented to help our staff and participants adopt and maintain healthy behaviors to improve overall health. This is especially important as we see light at the end of the COVID tunnel and everyone can benefit from some self-care!

A committee formed of staff volunteers has been doing lots of research and discovered the benefits of HYDRATION are so amazing that the group decided to put the starting focus there!  Being properly hydrated allows our circulation to carry nutrients effectively to our body’s cells. As a result, hydration has a myriad of terrific benefits. Hap P. Waterdrop is the campaign mascot who, along with a Star Wars Storm Trooper, greeted people around the CP Nassau headquarters and encouraged all to participate in a survey that was custom designed to assess the level of interest in improving health and wellness among staff. Everyone who completes the survey receives a unique “Wellness on the MOVE” water bottle and is entered in a raffle to win $500!  So far, there is a great level of enthusiasm for this exciting new effort that is just the start of getting all at CP Nassau to be their best self!

CP Annual Conference – Session Info and Presentations

If you missed the exciting and informative sessions at the 2021 CP Annual Conference, you can catch up here!

Please note: Due to the nature of some subjects, we are not able to make every presentation available. 

NYS Medicaid Program Update

An update on the NYS Medicaid program and its plans for the I/DD sector.

Speaker: Brett Friedman, Medicaid Director, Office of Health Insurance Programs, NYS Department of Health

Download the presentation [PDF].

Using Social Media for Effective Advocacy

Tik Tok? Twitter? Facebook? Woof? How should we use the ever-changing landscape of social media to connect with our legislators and their constituents? This session will look at the impact of good digital communication and advocacy on the real world.

Speakers: Barbara Crosier, Bill DeVoe

Download the presentation [PDF].

Google Project Euphonia

This session will present an overview of what Project Euphonia is, the goals with case studies, and the need for gathering enough recordings. Data collection efforts with Euphonia will be discussed including some updates on the details of the data collection. Additionally, the presenter will discuss the trusted tester program and how individuals with ID/DD can get involved. This session is good for both professionals and parents or anyone who wants to know more about how technology can help someone with speech impairments communicate better.

Speakers: Marilyn A. Ladewig, Speech Language Pathologist, Google

Download the presentation [PDF].

SPONSORED BY GOOGLE

Telehealth Grant Update

This session will provide an update on the CP of NYS Telehealth Grant, and current data will be shared along with satisfaction data on the client experience.

Speakers: Meghan Calichman, Dr. Matthew Kaufman, Deb Williams

Download the presentation [PDF].

The Future Of Residential Programs: Managing Our Current Realities As We Plan

This interactive session will explore what various Affiliates are experiencing now and how they are planning for the future with a focus on rightsizing, staffing, vacancy management, integration of day activities, special initiatives, and future models.

Speakers: Tom Gillespie, Kathy Klosner, Susan Mentecki, Dahlian Porter

Download the presentation [PDF].

BDO: Non-Profit Standards

BDO’s 5th Annual Nonprofit Standards: A Benchmarking Survey will be discussed along with key findings and trends.

Speakers: Matthew Becker, Adam Cole, Keith Linzer

Download the presentation [PDF].

Advocacy: Setting The Table For 2022 Legislative Session

This panel will look at public relations strategies surrounding an advocacy campaign, choosing the right tactics, and setting objective goals for determining success.

Speakers: Barbara Crosier, Bill DeVoe, Tommy Meara, Evan Sullivan

Download the presentation [PDF].

Independent Living Through Self-Direction

Advocates Incorporated’s Residential Team will discuss approaches to putting the pieces together for people wishing to self-direct their services to live independently within their own communities. Topics will include getting started with the Self-Direction process and how to leverage a person’s individualized Self Direction budget to support non-certified independent living. We will provide an overview of various pieces of the puzzle including self-hired staffing, Residential Coordination, Paid Neighbor and Live-in-Caregiver components.
Speakers: Amy Dugliss, Executive Director; Beth Henderson, Director of Operations; Reina Campbell, Housing Navigator/Broker Supervisor – Advocates Incorporated
Click here to watch the presentation. 

Download the presentation [PDF].

Diversity and Inclusion: Getting to be Clear

The topic of Diversity & Inclusion (D&I) has been an area of focus for several years. However, in many organizations, little progress has been made in terms of truly leveraging the value of D&I to create true inclusive environments. In this session, we will work to BE CLEAR and intentional about D&I efforts which will support a sustainable strategic approach in your organization.

Speaker: Delphia Howze, Owner & CEO, D. Howze Solutions, LLC

Click here to watch the presentation. 

MOVE Program

This session will offer an overview of the MOVE program and how it has been implemented at various sites. It will address the challenges in implementing MOVE and provide strategies to overcome these challenges. Highlights include how the MOVE program has helped increase choice-making opportunities for individuals, encourage independence for individuals in moving about their environment and reduce lifting on the part of family members and support providers.

Speakers: Karrie Diacetis, Program Manager – MOVE International; Symong Choi, DPT, PT Supervisor – CP of Long Island; Melissa D’Accardo, PhD, Curriculum & Training Specialist – CP Unlimited

Click here to watch the presentation. Did you attend the conference? Click here to leave feedback!