Read the transcript from the web chat with OPWDD Commissioner Courtney Burke on October 22, 2011.
Submitted by Courtney Burke on Sat, 10/22/2011 - 10:00am
Unfortunately, we are out of time for our chat. If your question was not addressed, please email it to [email protected] and we will get it answered. Thank you all for your participation today. OPWDD is an agency undergoing transformation, and your engagement has—and continues—to improve our entire system. Courtney
Submitted by Leslie on Sat, 10/22/2011 - 9:51am
Who would be determining what the appropriate supports are for each individual with developmental disabilities?
Bayside, New York
assessment of services
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:59am
A team of people will be determining appropriate levels of support, including the individual and their family members. In the absence of family members, other people important in the individuals lives, who can speak to their abilities, will be involved.
Submitted by Betty on Sat, 10/22/2011 - 9:35am
Because of my own health issues, I find it very difficult to care for my grandaughter with severe CP. She needs at least 10 hours a day of care. I applied to CASA and was turned down due her intense needs. She is not eligible for the lombardi program or the MLTC and CHHAs will no longer take her because of high need. I want to keep her home as long as possible but my MSC is throwing up her hands. What should I do?
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:56am
Betty, I have spoken with many parents who share your concerns. Please contact your local DDSO (Bernard Fineson) at 718-217-4242 -- they can help identify if additional resources are available in your region.
Submitted by Kathy on Sat, 10/22/2011 - 9:38am
Will this allow for more or less placements for Community people
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:55am
One of the major goals is to move people from institutional settings to community based settings. And in doing so, redirecting resources to allow for more community placements. Since the 1970s, the state has closed 11 of its “developmental centers” and transitioned the individuals and their services to community opportunities. We are continuing that progress, and plan to close four more developmental centers before the end of 2014.
Submitted by Carol on Sat, 10/22/2011 - 9:17am
I've only just learned about the waiver planning despite being heavily involved in advocating for my sister and son who both have developmental disabilities. Is this a done deal? Is there no more opportunity to stop this from happening? Is this just to 'get the info out', not actually change what you plan to do?
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:53am
We have been actively engaging individuals with developmental disabilities and their families in all waiver planning. It is not a done deal. There are tremendous positive changes that can come out of the waiver. We have over a year ahead of us in simply planning the implementation of the waiver, and we will continue to value and seek input from families and individuals. Please visit http://www.opwdd.ny.gov/2011_waiver/index.jsp to sign up for the waiver mailing list, and also to receive information about our progress and events to ensure the public remains informed throughout this process.
Submitted by Tina on Sat, 10/22/2011 - 9:21am
Where can we locate information on the specific assessment scales being considered for use under the 1115 Waiver? How and when, can we provide input to this topic? The current DDP forms are too limiting in the questions asked and too limited in the response choices.
New Assessment Scales
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:50am
On the waiver Access and Choice Design Team” link, http://www.opwdd.ny.gov/2011_waiver/waiver_design_teams.jsp, the design team agreed the current DDP forms are too limiting. To provide input on the assessment tools please email [email protected] and we will make sure it is distributed to the appropriate people. Thanks for your involvement.
Submitted by Tammy on Sat, 10/22/2011 - 9:29am
I love my service coordinator. I have worked with her for many years. Am I going to lose her?
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:47am
I was optimistic the original agreement between Governor Cuomo and the PEF leadership would pass, and was disappointed when it did not. Our focus is on continuity of services for every individual in our care, with as little disruption as possible. The PEF membership will vote November 3. If it passes, layoffs are rescinded.
Submitted by LeeAnn on Sat, 10/22/2011 - 9:31am
Can Service Coordinators be requalified as DISCOS or part of them?
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:45am
Care coordination will be a primary goal of the DISCOs (Developmental Disability Individual Supports and Care Coordination Organization). In the coming months the agency will be seeking applications for demonstrations of how care coordination can improve service delivery.
Submitted by Amanda on Sat, 10/22/2011 - 9:05am
What is the most significant change you hope to result from the new 1115 waiver?
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:42am
That individuals with developmental disabilities and their families will have access to exactly the right services and supports to help them be as independent and happy as possible. Right now, we have a very inflexible system which provides too much or too little support for many individuals.
Submitted by Anonymous on Sat, 10/22/2011 - 9:11am
With the new changes coming, will consumers still have the choice of where their day services are given?
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:39am
Yes. And under the waiver we hope to offer more prevocational and employment services as options
Submitted by Marisa Oni on Sat, 10/22/2011 - 8:43am
How does OPWDD plan to promote employment for people with disabilities
Walden New York
Employment for people with disabilities
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:38am
Employment is a major priority of the agency. We are part of a national network that plans to double the number of individuals in our system who work – from about 9,000 to 18,000 people. This coming week OPWDD will hold its annual Works For Me awards celebration, honoring the great businesses who hire individuals with developmental disabilities and their employees. Information about the event can be found online at http://www.opwdd.ny.gov/news/new_opportunities.jsp We are looking to strengthen partnerships with private businesses and other state agencies to ensure individuals have the skills they need to successfully maintain employment.
Submitted by John on Sat, 10/22/2011 - 8:57am
I'm sure you saw those disturbing articles in the New York Times- what are your thoughts? How did you react?
New York Times
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:35am
Governor Cuomo nominated me to this position to help reform the system, along with Roger Bearden at CQC and Clarence Sundram as the Governor’s Special Advisor on Vulnerable Persons. The stories that came to light in the New York Times were obviously very disturbing, but they helped identify where the system had broken down. Since then, we have undertaken many steps to strengthen safety and accountability throughout state and nonprofit services. We expect to be releasing a six month report soon which will show some of the progress we have made, and additional areas we will be focused on to further strengthen the system in the coming months.
Submitted by John on Sat, 10/22/2011 - 8:59am
Are people automatically eligible for services? Who should we contact for help?
Eligibility for services
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:31am
Individuals have to determined to be eligible. There is a process we guide people through to determine if an individual has a developmental disability, and the level of care that is needed. The easiest way for people to learn more and get in touch with the appropriate people is by calling our infoline at 1-866-946-9733.
Submitted by Carol on Sat, 10/22/2011 - 9:03am
Giving people with developmental disabilities more freedom, choice and independence sounds like a wonderful goal. However, those of us who have family members with these disabilities understand that the nature of their disability means that giving them this is often NOT what is in their best interest. By definition, they have a inability to think, reason and function as a typical adult. They are developmentally not able to make good choices about their own living arrangements, goals and expectations for life. I'm one of many people with a loved one who is higher functioning and as such, I've not gone through the extensive work and expense to become her legal guardian. What safeguards will be in place to be certain that she will not be talked into a 'less restrictive' environment she can not handle? For people without a legal guardian, who will be determining what freedoms and choices a particular individual can really handle? How will crisis situations be handled if/when developmentally disabled adults end up in situations with more freedom and independence than they can handle?
Giving those with developmental disabilities more freedom and choice
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:28am
Great question. Because the waiver is still being designed, we are considering these very issues. A primary goal of the 1115 waiver is to evaluate each individual’s abilities to determine the most appropriate level of services. This should lead to individuals having better access to more integrated lives. We are aware that we need to make sure the waiver also provides appropriate safeguards for crisis situations. People who conduct assessments will be properly trained on new assessment tools that will better determine what supports individuals need.
Submitted by Aimee on Sat, 10/22/2011 - 8:59am
Your office began with the scandals at Willowbrook. How, 30 years later, are we still reading about people being abused? What happened?
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:25am
The system became complacent. Many of the changes, including the formation of OPWDD—then OMRDD—came out of Willowbrook. In particular, the need to transition people out of institutional settings and into more community based residential opportunities. Unfortunately, this system lacked the oversight and transparency it needed to catch concerns before they became systemic problems. In our first six months we have gone back to basics, health and safety, and in our next six months are focused on improving services and types of care people receive. We have raised the standard on who we are hiring, overhauled our investigations process and centralized it for proper oversight, and revamped our process on reporting incidents. Additionally, we have partnered with law enforcement so that potentially criminal incidents are properly investigated, among other reforms.
Submitted by Steve on Sat, 10/22/2011 - 8:55am
How do we make sure that nedded resouces go dircetly to service provision and don't just end up in the pockets of program administrators? Greater transparancy is needed.
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:22am
I absolutely agree that greater transparency is needed. We have begun to make information publicly available on our website about nonprofit providers and their performance. We will be rolling out additional information about the quality of services for providers in the coming months, as well as information about use of resources. In addition, I am participating in the Governor’s task force on executive compensation for nonprofits, which is looking system wide at their use of Medicaid dollars.
Submitted by Kerri on Sat, 10/22/2011 - 12:33am
With the new 1115 waiver, are service coordinators going to eventually lose their positions? Are the positions being abolished?
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:19am
The purpose of the waiver is to empower individuals and families with more flexibility in the services and supports they receive, which will require a whole team of people will assist individuals in coordinating services.
Submitted by Scott on Sat, 10/22/2011 - 8:48am
Why are autism rates increasing?
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:17am
I believe it is not that the rate of autism is increasing, but diagnosis. Like many developmental disabilities, there has been a historical lack of understanding and knowledge. As society becomes more aware, more diagnosis are occurring which better sets us up to provide individuals and families with the supports and services they need.
Submitted by Holly on Sat, 10/22/2011 - 8:42am
when and where will advance information be posted for families to have input to Medicaid 1115 waiver planning? I only learned of this web chat on 10/21, and some families may be unable to participate due to religious observances. Thank you.
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:14am
Holly, it’s great to hear that you want to get involved. We are making the waiver process as public as possible. You can learn what has happened so far at http://www.opwdd.ny.gov/2011_waiver/index.jsp. Additionally, we have five public presentations occurring over the next few weeks, as well as many future events in the works. The information about those events can also be found on the waiver website. You can also sign up to receive alerts via email.
Submitted by Terry on Sat, 10/22/2011 - 8:28am
I was very happy to see the agency remove the “R” word from its title. What are you doing to educate people about this hurtful word?
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:11am
That was a big and important step for the state to take. The “R” word began as a medical term but over the years became something quite derogatory and hurtful. We have a campaign known as People First Language, which is why we use the phrase “individual” instead of clients, residents, etc. We also promote the national “Spread the word to end the word” campaign. People can take the pledge at http://www.r-word.org/
Submitted by Dawn on Fri, 10/21/2011 - 12:40pm
As the parent of a college student with Aspergers .... What assistance can my son receive when he graduates to obtain employment in his field of study and independent living skills... There is nothing in this rural area that I know of.
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:09am
Employment and residential opportunities for all individuals with developmental disabilities is critical to OPWDD’s mission. We have a Center for Employment Excellence which can be found online at http://www.opwdd.ny.gov/cee/index.jsp. Also, to determine what local services are available you will want to reach out to your regional DDSO, whose contact information can be found at http://www.opwdd.ny.gov/document/hp_contacts.jsp
Submitted by Terri on Sat, 10/22/2011 - 7:20am
Thank you for speaking with us this morning. I am the mother of a seventeen-year-old son with moderate/severe autism and I am employed full time by one of your provider agencies as well. I've been told by a Trustee of another provider agency that, despite the plethora of information you've disseminated to the contrary, when April 1st arrives, all stakeholders, not just those who choose to participate in a DISCO pilot, will provide and receive services under their regional DISCO. In other words, all agencies will lose their rates as of April 1st and be will be mandated to join a DISCO in order to continue providing services. Can you please state whether this is true, and if it is true what specific plans are in place to ensure continuity and availability of services. It's hard for this mother to envision provider agencies losing their rates for a presumably much lower rate under the DISCO, without jeopardizing their fiscal sustainability and ability to serve their clientele and expand to meet the needs of the tsunami of children aging out of the educational system. Thanks again for your time.
Continuity/Availability of Waiver Services
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:06am
First of all, we aren’t certain the waiver will definitely begin on April. Second, a demonstration period will happen first, so not everybody will be participating in demonstrations in the first year. Third, the purpose of the demonstrations is to see how well a new rate setting process works well and where it’s shortcoming are.
Submitted by Patricia on Sat, 10/22/2011 - 7:34am
If your adult child is currently in an IRA with one agency and attends Day Habilitation with another Agency will he/she have to attend Monthly Community Day Habilitation with the agency providing residential services.
Monthly Community Day Habilitation
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:05am
We don’t anticipate any individual will have to change which agency is providing services is implemented.
Submitted by Patricia on Sat, 10/22/2011 - 7:39am
Can a agency who provides services such as Residential Habilitation and Day Habilitation contract with more than one DISCO.
DISCO's and providers
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:03am
Yes, once DISCOs (Developmental Disability Individual Supports and Care Organization) are up and operational. For more information visit opwdd.ny.gov, and under the services tab click on People First Waiver. Thanks.
Submitted by Paul on Sat, 10/22/2011 - 6:57am
What is considered to be a developmental disability?
Submitted by Courtney Burke on Sat, 10/22/2011 - 9:01am
Important question. We serve a diverse population of about 126,000 individuals with developmental disabilities, which includes intellectual disabilities, cerebral palsy, Down syndrome, autism spectrum disorders, and other disabilities. A developmental disability is generally diagnosed before the age of 22.
Submitted by Courtney Burke on Sat, 10/22/2011 - 09:00am
Good morning, this is Courtney Burke, commissioner of the Office for People With Developmental Disabilities. Thank you very much for joining our chat this morning—I am looking forward to our discussion. We will get through as many questions as possible during our allotted time. If your question does not get answered, please email it to [email protected] We also have an information line at 1-866-946-9733, and maintain a very active Facebook page. Let's begin.