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/
Monday, December 8, 2014
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.
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.
Saturday, November 22, 2014
A Guide to Self-Direction from some folks who know
The New York Self-Determination Coalition has a Guide for Families that gives helpful scenarios of how folks are using self-direction with budget authority to direct their services with OPWDD funding.
Not too bound up in jargon, a true practical guide. 48 page PDF
Self-Direction in New York: A Practical Guide for Families
Not too bound up in jargon, a true practical guide. 48 page PDF
Self-Direction in New York: A Practical Guide for Families
Governor to Legislature RE: ID/DD constituents and families -- "I'll tell you your opinion when I'm ready to hear it"
"From a NYSARC Memo”
GOVERNOR VETOES ALL FOUR BILLS
A couple of weeks ago, in anticipation of the Governor’s actions on the bills below, we asked you urge him to sign the measures. We were reasonably sure the Governor would veto at least one of the bills, namely S6641 which reforms the Front Door process. In fact he vetoed all four bills.
No doubt anticipating a negative reaction to such sweeping vetoes, the Governor waited until after elections to have the bills delivered to his desk.
Prior to elections the Governor signed one key bill, S.7232 requiring the Justice Center to follow safety protocols when interviewing a consumer.
All the bills below represent important concerns for people with developmental disabilities and their families. The sweeping nature of his vetoes is troubling especially given a continuing lack of engagement and transparency by the Administration with the entire field regarding these bills and other issues, an indifference which appears to extend beyond the field of developmental disabilities to other human services areas.
Here are the bills along with the veto messages (see links) released by the Governor:
1) The S.6641 by Carlucci reforming the Front Door process. The Governor’s veto message sites cost and duplication of reform efforts already underway as the reason for his veto. Reports however indicate that the Front Door process is still broken and that the crisis of people in need of out of home care – an important part of this bill – is getting worse, not better.
2) S.7400 by Carlucci requiring that providers of service contracting with Managed Care Organization’s continue to consist of the trusted system of nonprofit and public providers. The Governor’s veto message claims that the bill violates the Commerce clause of the US Constitution by limiting entities that can provide services under managed care. This was wasn’t mentioned in extensive negotiations during the Spring. That the Commerce Clause came out of the blue makes us skeptical that it is a valid excuse. Furthermore, this veto raises disturbing questions about what the Administration intends the managed care system for people with developmental disabilities to ultimately look like. Does it intend to replace the current system, at least in part, by inviting out-of-state for-profit provider into New York State? Does the Administration currently have no such plans but wants the flexibility that this bill would eliminate? Or is the reason for this veto in fact legitimate?
We don’t know the answer but this particular veto greatly increases the existing uncertainty around managed care; further underscores concerns about a lack of transparency; and, adds even more confusion to the entire managed care initiative.
3) Task Force bill S.6659 establishes a Task Force to assess and plan for the needs of Adults with developmental disabilities. The veto message states that this “legislation simply duplicates efforts the Administration has undertaken” as well as the efforts of the Governor’s Olmstead Cabinet.
4) People First bill S.1109 requires identification of gaps in the existing developmental disabilities service system. The veto message states that this “legislation simply duplicates efforts the Administration has undertaken”
Summaries of vetoed bills:
1) “Front Door” S6641-C (Carlucci)/A8846 C (Weisenberg)-This bill would amend the Mental Hygiene Law to require the Commissioner of the OPWDD to develop a plan to overhaul and improve the front door process. The Front Door is intended to allocate services to people with developmental disabilities efficiently, based on person-centered planning. S. 6641 requires that the Plan provide for a clear, rational and transparent Front Door process. It requires expedited care for persons in critical need and for OPWDD to regularly submit an updated waiting list of people in critical need of out-of-home care. The current Front Door process is making the issue of sufficient development for people in out of home care worse, not better. This bill would hopefully improve that. The plan must be submitted to the Speaker of the Assembly and the Senate Majority Leader no later than January 1, 2015 with implementation beginning no later than April 1, 2015.
2) OPWDD Services Under Managed Care – S.7400-B (Carlucci)/A.9766-A (Gunther) -This bill clarifies that those entities that provide supports and services for individuals with developmental disabilities, such as residential, day and employment services, must be public or non-profit entities with experience providing those services under OPWDD regardless of the type of managed care entity: Developmental Disabilities Individual Support and Care Coordination Organization (DISCO); Managed Care Organization (MCO); or Managed Long Term Care (MLTC) program.
3) Task Force on Adults with Developmental Disabilities S6659-A (Carlucci)/A.8835-A (Gunther)- This bill would create a task force on adults with developmental disabilities to study, evaluate and develop recommendations relating to measures to support and meet the needs of adults with developmental disabilities, including their vocational, residential and social needs. The task force will also study the long-term needs of adults with developmental disabilities who reside with caregivers. The recommendations of the task force would lead to the creation of a comprehensive plan for meeting the needs of adults with developmental disabilities which is to be submitted to the Governor and the Legislature by January 1, 2016.
4) People First Act of 2014 – S.1109-D (Maziarz)/A.8452 (Gunther) – This bill requires the Commissioner of OPWDD to conduct a geographic analysis of the supports and services available in a community setting to individuals with developmental disabilities and to identify gaps in supports and services by regions of the state. The Commissioner is also directed to develop a web-based data base which will permit the prioritization of urgency of needs for those facing emergency or immediate need, those facing critical need, defined as additional services and supports within one year and planned need for those who will need additional services and supports within five years or where the individual’s caregiver is over sixty years old. Annual reporting requirements will allow the Legislature and the Executive to make informed policy decisions in the delivery of services and supports to individuals with developmental disabilities.
GOVERNOR VETOES ALL FOUR BILLS
A couple of weeks ago, in anticipation of the Governor’s actions on the bills below, we asked you urge him to sign the measures. We were reasonably sure the Governor would veto at least one of the bills, namely S6641 which reforms the Front Door process. In fact he vetoed all four bills.
No doubt anticipating a negative reaction to such sweeping vetoes, the Governor waited until after elections to have the bills delivered to his desk.
Prior to elections the Governor signed one key bill, S.7232 requiring the Justice Center to follow safety protocols when interviewing a consumer.
All the bills below represent important concerns for people with developmental disabilities and their families. The sweeping nature of his vetoes is troubling especially given a continuing lack of engagement and transparency by the Administration with the entire field regarding these bills and other issues, an indifference which appears to extend beyond the field of developmental disabilities to other human services areas.
Here are the bills along with the veto messages (see links) released by the Governor:
1) The S.6641 by Carlucci reforming the Front Door process. The Governor’s veto message sites cost and duplication of reform efforts already underway as the reason for his veto. Reports however indicate that the Front Door process is still broken and that the crisis of people in need of out of home care – an important part of this bill – is getting worse, not better.
2) S.7400 by Carlucci requiring that providers of service contracting with Managed Care Organization’s continue to consist of the trusted system of nonprofit and public providers. The Governor’s veto message claims that the bill violates the Commerce clause of the US Constitution by limiting entities that can provide services under managed care. This was wasn’t mentioned in extensive negotiations during the Spring. That the Commerce Clause came out of the blue makes us skeptical that it is a valid excuse. Furthermore, this veto raises disturbing questions about what the Administration intends the managed care system for people with developmental disabilities to ultimately look like. Does it intend to replace the current system, at least in part, by inviting out-of-state for-profit provider into New York State? Does the Administration currently have no such plans but wants the flexibility that this bill would eliminate? Or is the reason for this veto in fact legitimate?
We don’t know the answer but this particular veto greatly increases the existing uncertainty around managed care; further underscores concerns about a lack of transparency; and, adds even more confusion to the entire managed care initiative.
3) Task Force bill S.6659 establishes a Task Force to assess and plan for the needs of Adults with developmental disabilities. The veto message states that this “legislation simply duplicates efforts the Administration has undertaken” as well as the efforts of the Governor’s Olmstead Cabinet.
4) People First bill S.1109 requires identification of gaps in the existing developmental disabilities service system. The veto message states that this “legislation simply duplicates efforts the Administration has undertaken”
Summaries of vetoed bills:
1) “Front Door” S6641-C (Carlucci)/A8846 C (Weisenberg)-This bill would amend the Mental Hygiene Law to require the Commissioner of the OPWDD to develop a plan to overhaul and improve the front door process. The Front Door is intended to allocate services to people with developmental disabilities efficiently, based on person-centered planning. S. 6641 requires that the Plan provide for a clear, rational and transparent Front Door process. It requires expedited care for persons in critical need and for OPWDD to regularly submit an updated waiting list of people in critical need of out-of-home care. The current Front Door process is making the issue of sufficient development for people in out of home care worse, not better. This bill would hopefully improve that. The plan must be submitted to the Speaker of the Assembly and the Senate Majority Leader no later than January 1, 2015 with implementation beginning no later than April 1, 2015.
2) OPWDD Services Under Managed Care – S.7400-B (Carlucci)/A.9766-A (Gunther) -This bill clarifies that those entities that provide supports and services for individuals with developmental disabilities, such as residential, day and employment services, must be public or non-profit entities with experience providing those services under OPWDD regardless of the type of managed care entity: Developmental Disabilities Individual Support and Care Coordination Organization (DISCO); Managed Care Organization (MCO); or Managed Long Term Care (MLTC) program.
3) Task Force on Adults with Developmental Disabilities S6659-A (Carlucci)/A.8835-A (Gunther)- This bill would create a task force on adults with developmental disabilities to study, evaluate and develop recommendations relating to measures to support and meet the needs of adults with developmental disabilities, including their vocational, residential and social needs. The task force will also study the long-term needs of adults with developmental disabilities who reside with caregivers. The recommendations of the task force would lead to the creation of a comprehensive plan for meeting the needs of adults with developmental disabilities which is to be submitted to the Governor and the Legislature by January 1, 2016.
4) People First Act of 2014 – S.1109-D (Maziarz)/A.8452 (Gunther) – This bill requires the Commissioner of OPWDD to conduct a geographic analysis of the supports and services available in a community setting to individuals with developmental disabilities and to identify gaps in supports and services by regions of the state. The Commissioner is also directed to develop a web-based data base which will permit the prioritization of urgency of needs for those facing emergency or immediate need, those facing critical need, defined as additional services and supports within one year and planned need for those who will need additional services and supports within five years or where the individual’s caregiver is over sixty years old. Annual reporting requirements will allow the Legislature and the Executive to make informed policy decisions in the delivery of services and supports to individuals with developmental disabilities.
Wednesday, November 19, 2014
PLAN Institute Releases 2014 Edition of Safe & Secure E-Book
Planned Lifetime Advocacy Network is a Canadian not-for-profit providing training and resources for families of persons requiring support.
Accordingly, some of the regulatory and policy statements in their materials are Canada-specific, but in terms of thoughtfully addressing the emotional and social realities of caring and planning for the future of a person who will require care when a parent is gone.
Safe & Secure helps you conceptualize a process for future planning that is not locked into administrative hurdles like an 18th birthday and considering guardianship, or transition to adult living at age 21, but in language that both respects the citizenship of folks who require care and the anxiety of those who provide it.
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