Ripples 5/31/17

From Patty Kowalchuk Values into Action – New Jersey Managing Directorripples-3

Happy (belated) Memorial Day!

I had the pleasure of spending time with Louise, a person who is growing from being an acquaintance into a friend. I think finding a true friend is hard, and I know for myself that determining who is a friend involves great introspection. In the meantime, I also know that being friendly is an awesome way to go.

Here’s to friendship!

Click here for this week’s Ripple.

The Alliance for Citizen Directed Supports Announces Founding Board of Directors

The Alliance for Citizen Directed Supports (ACDS) is a new international association being established in
response to a growing need for people with disabilities, their families and those people and organizations that
support them to have ways to share ideas and resources through a network for people committed to the shift to
individualized, person-directed supports. The Alliance for Citizen Directed Supports will collect and
disseminate knowledge, ideas and practices to advance individually designed, implemented, controlled and
evaluated services and supports.

The Alliance for Citizen Directed Supports has been incorporated by Caitlin Bailey, Marian Frattarola-Saulino,
Gail Godwin and Nancy Weiss, who welcome the additional newly elected members of the Founding Board of
Directors. The additional Board members are: Julia Bascom, Lydia Brown, Larissa Clause, Kelly Bohlander
Friedlander, Angela Martin, Amanda Rich and Michael Steinbruck.

The organization serves as a catalyst to transform traditional service approaches and champion innovation. The
Alliance for Citizen Directed Supports is an association of people committed to self-directed supports that offer
opportunities for lives of meaning and impact. We proudly support, and seek to include, everyone who is
committed to ensuring people with disabilities exercise their rights and live fully included lives in the
communities of their choice.

We look forward to working collaboratively to build a strong, vibrant organization that includes and supports
the interests of the many people, families, groups and organizations that promote and enable self-direction, in
the United States and around the world. Together, we will expand and support the efforts of those seeking to
make a better way for themselves and others.

For more information about the Alliance for Citizen Directed Supports, and for information about how to
become a founding member of this new organization, contact Marian Frattarola-Saulino, Chair at
marians@viapa.org.

ACDS Opposes HHS Decison to Delay Implementation of HCBS

The Alliance for Citizen Directed Supports opposes the newly announced HHS decision to delay the implementation of the Home and Community Based Final Rule

The recent announcement of the U.S. Department of Health and Human Services to delay implementation of the
Home and Community Based Services Final Rule compromises the civil rights of people with disabilities and
delays access to the freedoms that people without disabilities enjoy as a matter of course.

The new international association, the Alliance for Citizen Directed Supports, opposes HHS’s recently
announced decision to delay the implementation of the HCBS Final Rule until 2022. By delaying the
implementation of the HCBS rule and the changes in service models that will be required to meet these Federal
regulations, HHS is delaying the affirmation of peoples’ rights, denying opportunities of full citizenship and
impeding access to full and meaningful lives.

The Final Rule, CMS 2249-F – 1915(i), was originally announced by the Centers for Medicare & Medicaid
Services (CMS) in October 2014 and implementation was to be required in 2019. The rule was designed to
enhance the quality of Home and Community-Based Services and ensure that people receiving services through
these Medicaid waiver programs have full access to the benefits of community living. The regulation was
developed over five years and crafted in response to input that CMS sought from thousands of stakeholders.1 In
2014, when HHS Secretary Kathleen Sebelius announced the new rule, she described its purpose as being to
“ensure that all people participating in Medicaid home and community-based services programs have full access
to the benefits of community living.”2 Members of the Alliance for Citizen Directed Supports believe that
delaying the implementation of the HCBS Rule will result in people continuing to be isolated in service settings
thus denying their human and civil rights. We are heartened and encouraged to know that many states and
service providers are committed to continuing their efforts to comply with the rule in a timely manner but many
more will take advantage of the opportunity to delay implementation of the important changes the rule
prescribes.

The Alliance for Citizen Directed Supports is a recently established international organization of people with
disabilities, their family members, service providers, advocates, organizations and allies. The organization
serves as a catalyst to transform traditional service approaches and champion innovation. The Alliance for
Citizen Directed Supports is an association of people committed to self-directed supports that offer
opportunities for lives of meaning and impact. We proudly support and seek to include everyone who is
committed to ensuring that people with disabilities can exercise their rights and live fully included lives in the
communities of their choice.

For more information about the Alliance for Citizen Directed Supports contact Marian Frattarola-Saulino,
Chair, at marians@viapa.org.

Ripples – 5/24/17

This week’s Ripple is about conquering fear.ripples-3

Recently, Values learned that we lost someone who taught support coordination a lot about fear. She was the epitome of the person who was keeping it together by a shoestring, and at any time, we knew that things might fall apart. Her fierce independence and literal demands to us (e.g. “Don’t you DARE call my sister-in-law!”) taught us a lot about the balance between health/safety and right to self-direction. Every time I pulled away from her house, I’d think “Please keep it together”. And she did, until she couldn’t keep it together anymore. And maybe it’s just that simple. Enjoy the read on fear, and if you are feeling particularly brave, break away from the rigors of the day to watch the video link at the bottom. It’ll make your spirit brave.

Click here for this week’s Ripple.

Ripples 5/17/17

From Patty Kowalchuk Values into Action – New Jersey Managing Director

ripples-3When it comes to Paul, The Ripples Guy, and his Ripples, I’m starting to feel a little like Michael Corleone in The Godfather III: “Just when I thought I was out, they pull me back in.” This week’s Ripple has might as well have been prefaced “Hey, you – NJ VIA – read this!” What great prescriptive wisdom it holds for each of us going through the tremendous changes in New Jersey.

Ride that wave and enjoy this Ripple!

Click here for this week’s Ripple.

 

Ripples 3/22/17

from Patty Kowalchukripples-3 Values into Action – New Jersey Managing Director

Recently, I had the great fortune of getting away for a few days to attend ski races. Part of that trip enabled me some time to ski, and I had the terrific luck of skiing with parents who I’d known for a long time but never really did anything with – we exchanged smiles and pleasantries in the lodges along the way, but that was it…until this weekend. I skied with a small group of parents who are all much better skiers than I, and skiing with them gave me confidence and brought my game up a notch. Imagine that? Last time we will ever be in that particular grouping (my son graduates this year and will be off to college – with any luck), but it was some sort of synchronicity that made the pieces come together this time. It was great. I hope you find your meaningful connections, which are seemingly inexplicable, this week!

Click here for this week’s Ripple.

Children with Disabilities Must Retain Equal Access to Education

by: Jeremy EinbinderNJCDD l ogo

It’s well established that the rights of people with disabilities can be heavily tied to public policy and government activity.  People with disabilities, who continue to be at risk of discrimination and exclusion, must not be forgotten.  One of the most fundamental ways in which people can adequately participate in society is through education.  It is sometimes forgotten, however, that not everyone learns in the same way or using the same methods.  Of course, education, whether formal or informal, is valuable in all forms.

Luckily, society and the government have largely recognized the right of people with disabilities to learn.  However, it is a delicate right that must be protected at all costs, as the ideological views of any given administration may lessen or outright destroy it if the public is not vigilant.  Prior to the passage of the Individuals with Disabilities in Education Act (IDEA), it was common for children with any variety of disabilities to be deemed “unteachable”.  Thankfully, this is no longer the case, at least not in any official capacity.

That is why it was especially disappointing when, during the recent confirmation hearing of US Dept. of Education Secretary, Betsy DeVos, it was clear that she either believed that the enforcement of the IDEA should be enforced on a state-by-state level, or even worse, that she was not aware that the law even exists.  This kind of passive ignorance is not a good indication that the educational rights of children with disabilities will be protected in the coming years.

This raises an important point about the status of disabled people in the education system.  It may not be allowed for a school district to officially exclude someone from enrollment on the basis of disability, but regulations can remain unenforced if those overseeing the system don’t care to enforce them.  If the appointment of a US Secretary of Education who has never taught in or even attended a public school is any indication, it is not a stretch to worry whether the IDEA will be as protected as it once was.

One of the most important aspects of the IDEA is the mandate of the right to free and public education for children with disabilities.  In essence, a public school district is not allowed to refuse a student with a disability.  Every effort must be made to ensure that every child has an equal opportunity to learn.  School districts must also ensure that students with disabilities be integrated with their typically developing peers, in a provision known as “least restrictive access”.  Children with disabilities, the IDEA mandates, must not be prevented from learning alongside typically developing children, and must still retain the rights to their individualized education.

Individualized Education Programs (IEPs) specify that if a child has a disability and needs special education services because of their disability, a plan must be laid out which accounts for accommodations that the child needs in order to be adequately educated.  This is written by the child’s parents, teachers, and a variety of experts in the field of education.  All to ensure that a disabled child’s education is adjusted to their needs.

Despite all of this, there is one crucial circumstance on which the rights of children with disabilities hinge: Public schools must be thoroughly funded and well-monitored.  Secretary DeVos, however, is a prominent advocate of defunding public schooling in favor of an increase of private schooling instead.  She, and many people who agree with this viewpoint, refer to this as “school choice”.  The fact that there are some instances of sub-par public schooling in America is answered by Ms. DeVos and others with proposals to increase private and charter schools across the country.  Granted, there are aspects of the public education system in America that are problematic.  But the solution is not to weaken them.

The glaring problem with Ms. DeVos’s ideas is that private schools would not be required to abide by the standards of free and equal access to education for children with disabilities.  They would not be required to build IEPs, nor would they be required to ensure that children with disabilities learn alongside their typically developing peers.  In fact, it is entirely possible that a private school without the necessary investments set aside to ensure accommodations for students with disabilities may choose to not admit such students at all if they are viewed as too “burdensome”.

The families of children with disabilities tend to have less disposable income than the average American family, so not only would cuts to public education hurt them the most, but could very well make many students with disabilities once again “unteachable”.

Theoretical access to a basic right is useless if someone cannot afford it, or if no one makes sure it is carried out correctly.  There are problems in the funding of public schooling in America.  But the problems in education won’t go away by making public schooling less available.  In order for education to be a truly universal right, every effort must be made to make sure funding is equally distributed.  To strive for a fair and equal society, public education must be maintained.

Making it more difficult for children with disabilities to learn among their peers will only further marginalize them.  Strong and comprehensive public education suited to their needs can liberate them.  And that which can liberate the most vulnerable in society can liberate society as a whole.

Editor’s Note:  As with all contributions to the Disability in Focus blog, expressed opinions are not necessarily those of the Council’s membership. The NJCDD welcomes active conversations around issues important to people with developmental disabilities in New Jersey. We hope you’ll join the conversation in the “Comments” section below.

Ripples 3/1/17

from Patty Kowalchukripples-3 Values into Action – New Jersey Managing Director

Here in NJ, we are faced with lots of challenges as we grow, change, and evolve in an ever changing system. It’s good to be reminded that struggles are part of the journey. Do yourself a favor and read this week’s ripple – it’s an attitude changer!

Click here for this week’s Ripple.

Meet the Policymakers with Lt. Governor Kim Guadagno

Governor Kim Guadagno addressed members at a Meet the Policymakers event last month during the Chamber of Commerce of Southern NJ luncheon.

Heather Cooper, Resource & Development Director from Values into Action, NJ attended the event.

Guadango

Lt. Gov