What is self-direction of OPWDD services in NYS?

Self-Direction is the opportunity to have partial or complete management and/or budget authority of your OPWDD funded supports. As a Start-Up Broker I provide a consulting service (paid by the state of NY) to help you develop a proposal based on your assessments of need, and your interests and preferences, then present that to OPWDD for funding.

We'll engage in a person-centered planning process and identify a circle of support for you (related and unrelated, paid and unpaid people who care about you and have insight about your support needs, safeguards, and things you want to do in life). With your Circle and your MSC, I'll help you or your family to develop that proposal, find staff, and get them on payroll with the Fiscal Agency who will pay approved payroll and expenses.

It's not simple (hence my role as consultant) and it does require a fair amount of work from you or your family and circle. And it doesn't free you entirely from following regulations. But self-direction offers you an alternative to traditional agency services with greater control and complete focus on you instead of a larger organization providing a service to you.

Monday, December 8, 2014

Manhattan DD Council Meeting, December 11th with Guest Speaker on Emergency Room Utilization

Thursday, December 11 will be the next meeting of the Manhattan DD Council.  This month the meeting will be held at YAI, 460 West 34th Street, from 9:30 to Noon.

The guest speaker will be Meghan Blaskowitz, a doctoral student in Public Health who wrote her dissertation on Emergency Room Utilization Among Adults with ID/DD in the Bronx.  Her findings should offer insight into how our population can too easily experience poorly matched and costly ER and psychiatric unit admissions as a substitute for appropriate services.  Since i’ve only read the abstract of her dissertation, I’m guessing at her findings, but it’s clearly a worthy question.

And since she’s not currently a policymaker, I’m hoping she’ll be willing to be frank about what she found.

What she learned looking at experiences in the Bronx should be a preview of what OPWDD’s contractor for START Services is looking to survey in the coming two months.  OPWDD has contracted with the University of New Hampshire’s START Services to design and oversee preventive and crisis intervention services for persons with Intellectual or Developmental Disability and behavioral health needs throughout the state.   Its not really known how many $ of services will be involved with this new set of services, but it is of great interest (to me) because it is some of the only new money being spent in the ID/DD service space, and because it targets experiences that often result in additional trauma for families rather than help.  Our region, NYC Metro and Long Island, is the third region of the state to have this research-based model launched, and it’s my view that documenting the magnitude of the need for this service is part of advocating for sufficient resources.

In the coming months, the UNH folks will be conducting the ‘gap analysis’ step of their process, which involves outreach to community service providers including law enforcement, hospitals, schools, foster care, corrections, plus providers that contract with OPWDD, and to families.  For this gap analysis to be robust, we need to get lots of participation.  At my house, we’ve only gone to the ER or when it was appropriate, & never to the psychiatric ward, but I’ve heard from too many families about traumatizing experiences that did not meet the behavioral health needs, most frequently for adolescent males on the autism spectrum.  Hopefully, that focus reflects my personal networks more than the whole picture, but I suspect not.

After the Council meeting, there will be a brief meeting of the Council’s ad hoc committee on Parent Engagement, of which I am the parent co-chair.

And after that, if you can block that much time, I’ll be happy to lunch with any and all to digest what we heard at the meeting and find ways to productively engage with the system that serves our children.

Future schedule and details always available at www.manhattanddcouncil.org

More details about START in NY State at www.centerforstartservices.com/

What is the DD Council?  From the website:

> We are an official advisory body to the New York City Department of Health and Mental Hygiene, to the New York State Office For People With Developmental Disabilities (OPWDD), and the Manhattan Developmental Disabilities Services Office .We meet monthly to assess and identify needs of the Manhattan Community. We address all areas of concern in relation to existing services and needed services for people with ID / DD and their families.

It needs more family participation and active advocacy for new entrants to the service system and those whose support needs aren’t being met by existing services.  You probably know somebody that describes if it doesn’t describe you.

But this is a long-term goal, attending this month's meeting won’t alter any policy outcome or change your life or your child’s.

So here’s what I plan to do: for the coming year, I’ll send reminders about these meetings, and even an agenda.  My objective is to recruit more knowledgeable and effective family participation in this forum and anywhere we may effectively influence the State of New York, which is the lead decision maker in this area.

After the meeting, if you can spare the time, we’ll take our group to lunch nearby and debrief so that we deepen our understanding and eventually grow a group of savvy advocates so that this body expresses a fuller range of concerns than the usual business of provider agencies and their government agency funders.

And if you can’t make it, I’ll send around a quick report of the proceedings.

My efforts are aligned with but separate from NYC FAIR, a new group that hopes to activate parent advocacy at the DD Councils and elsewhere in all five boroughs.  I’ll include info about that in future missives.  Website at:   http://www.nycfamilyadvocacyinformationresource.org/

Tuesday, December 2, 2014

Tyze, a digital tool for your Circle of Support, or Team, or Family, or You

For those who are tired of always looking for evaluations, documents, and the like, here is a digital tool for organizing your supports, affiliated with PLAN Institute and free for individuals.

Tyze is info sharing in the cloud, but secure and with managed access for the folks you want to share information with.

Not certain if it is HIPPA compliant in terms of data security, but it seems to get positive reviews from its users.

Here's a third-party review of Tyze, and their site has links to other media coverage.