- Announcements
- Manhattan Family & Professional Resource Fair
- Thursday, December 18, 2014, 9:30 am – 2:00 pm
- Hotel Penn, 401 Seventh Ave. at 33rd Street, 18th floor
- Info on services and supports from over 90 service providers.
Family Support Services Committee
Tuesday, December 9, 2014, 10:00 am – noon
YAI, 460 West 34th Street, 11th floor
Information: Amy Bittinger (718) 859-5420 x 234; Abittinger@ucpnyc.org
Transition Committee
Wednesday, December 10, 2014, 9:30am – noon
AHRC, 83 Maiden Lane, 11th floor Board Room
Information: Kathy Kelly (212) 780-2724; Kathy.kelly@ahrcnyc.org
Legislative Committee: SAVE THESE DATES
- Manhattan Family Advocacy Day
Friday, February 27, 2015, 10:00 am – 2:00 pm
- Manhattan Legislative Breakfast
Friday, March 13, 2015, 8:00 – 10:00 am
Details to come. Information: Jim Malley (212) 928-5810 x 101; Jmalley@esperanzacenter.net
Children & Education Committee
To Be Announced
Information: Christina Muccioli (212) 780-2532; Christina.muccioli@ahrcnyc.org
Service Coordination Committee
To Be Announced
Information: Carol Lincoln (718) 859-5420 x 225; Clincoln@ucpnyc.org
DD Council
Thursday, December 11, 2014, 9:30 am
YAI, 460 West 34th Street, 11th floor
Information: Marco Damiani (212) 947-5770 x 456; manhattanddcouncilchair@gmail.com
Linda Irby and her son Todd were featured speakers at OPWDD’s Works for Me, available on the OPWDD website: http://www.opwdd.ny.gov/opwdd_community_connections/ works_for_me_event/main.
Lori Podvesker announced that City Council is holding hearings on Early Intervention, December 15 at 10:00 at 250 Broadway, 14th floor Committee Room.
Lynn Decker announced that Senator Squadron is sponsoring a meeting on December 11, at which some constituents may be able to testify. Contact Lynn for more information: lynn_decker@me.com.
- Update on Developmental Disabilities Advocacy Survey
The Developmental Disabilities Advocacy Survey (see info and link below) had 2,313 responses as of December 2. Families have been consistently listing the same priorities. The top priority for unmet service needs continues to be development of 24-hour residential opportunities. The second priority for unmet service needs is employment, and the third is help managing challenging behaviors. The top concern about managed care continues to be that managed care organization must have sufficient funding, otherwise services could be limited or denied. The second managed care priority is that people must have choice of provider; and the third is that the cost of the managed care infrastructure must not be deducted from funding for direct services. Data from the survey has already been cited twice to OPWDD and will later be used with legislators as well.
OPWDD held hearings October 27, where people testified from all areas of NYS. Again, the main concerns were (1) the need for 24-hour residential opportunities. (2) problems with self-direction, especially insufficient funds for people needing 24-hour residential services, as well as lengthy and complex approval process; (3) managed care is unknown territory.
The Governor’s budget recommendations are due to be released in early February. Intensive advocacy will follow, including Family Advocacy Day and the Legislative Breakfast (dates listed above, under Announcements).
- Update on Front Door and Legislation Affecting People with Developmental Disabilities
Front Door changes to expedite access to services:
- People seeking non-waiver services such as non-waiver family support services and Individual Supports and Services (ISS, a housing subsidy) – Need only confirmation of eligibility, EAA (Eligibility, Assessment, and Authorization) completion, update/completion of DDP2, and submission for service authorization. The Front Door Info session is optional.
- Graduates or others seeking only SEMP (Supported Employment)/Pathway to Employment who already have eligibility, MSC, DDP2 completed within past 2 years, and waiver approval – Need only EAA completion and submission for service authorization. The Front Door Info session is optional.
- People who must go through the entire Front Door process: those new to OPWDD, graduates who do not have waiver, those with only MSC or non-waiver family support services who are seeking waiver.
- Early in the process OPWDD staff will encourage and assist people to link to service coordination, obtain information needed for eligibility determination, and apply for Medicaid.
- Individuals currently receiving waiver services who are seeking to change or add services do not need to go through the Front Door. Instead, a Service Amendment process must be submitted.by the service coordinator.
Recent Legislation Vetoed by Governor Cuomo
The following 4 bills were passed by the Legislature but vetoed by the Governor. The vetoes are of concern in the developmental disabilities field.
“Front Door” S.6641-C (Carlucci)/A.8846-C (Weisenberg)-This bill would have required the OPWDD Commissioner to develop a plan to overhaul and improve the Front Door process. It would have required 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 Governor’s veto message says that “OPWDD continues to streamline and improve the Front Door process, but this legislation in many respects duplicates what is currently taking place. The bill would unnecessarily divert valuable staff and financial resources from this effort and would impose additional unbudgeted costs. As a result, this bill should have been considered in budget negotiations. Therefore, I cannot approve the bill. The bill is disapproved.”
OPWDD Services Under Managed Care – S.7400-B (Carlucci)/A.9766-A (Gunther) –This bill would have specified that those all managed care entities that provide supports and services for individuals with developmental disabilities must be public or non-profit entities with experience providing those services under OPWDD.
The Governor’s veto message claims that by “restricting providers of managed care services to only those with prior experience under the regulations of New York State, the bill would violate the Commerce Clause of the United States Constitution. Therefore, I cannot approve this bill. The bill is disapproved”.
Task Force on Adults with Developmental Disabilities S.6659-A (Carlucci)/A.8835-A (Gunther) – This bill would have created a task force on adults with developmental disabilities to study, evaluate and develop recommendations relating to measures to meet the needs of adults with developmental disabilities, including their vocational, residential and social needs. The recommendations of the task force would have led to the creation of a comprehensive plan for meeting the needs of adults with developmental disabilities which would have been submitted to the Governor and the Legislature by January 1, 2016.
The Governor’s veto message states that “This bill would establish a task force to make recommendations regarding measures to meet the needs of adults with developmental disabilities. This is, in fact and in law, the mission of the Office for People with Developmental Disabilities (OPWDD)….The bill is disapproved.”
People First Act of 2014 – S.1109-D (Maziarz)/A.8452 (Gunther) – This bill would have required the Commissioner of OPWDD to conduct a geographic analysis of the supports and services available and to identify gaps in supports and services by regions of the state. The Commissioner would also have been directed to develop a web-based data base to 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.
The Governor’s veto message states that “This bill would simply duplicate existing agency efforts and would impose additional bureaucratic burdens at significant additional costs with no discernible benefit flowing to the recipients of such services….The bill is disapproved.”
- Speaker: Dr. Mary Donohue on Coping with Loss Mary Donohue Grief Handout
Mary pointed out that there are no easy answers for people with developmental disabilities. There are lots of strategies and ideas for coping with the death or loss of a loved person. Much will depend on the family dynamics and skill level. Grief is often expressed emotionally and physically. Mourning is a process with conscious and unconscious rituals; mourning takes time and people will go through their own stages of grief. People tend to underestimate the amount of time mourning can take. People tend to receive support from others initially, but that fades over time. The eventual outcome is adjustment with sadness. But some people may need help if grief is prolonged and they experience extreme sadness and cannot function.
The bereaved experience primary loss, which is missing that person, but also secondary loss, which is missing the person’s role in the bereaved’s life (the person who cooked, who organized, who played basketball). The bereaved keep experiencing loss whenever those secondary losses arise. That is why the mourning process takes so long.
People with developmental disabilities may have additional challenges: cognitive, expressive and receptive language, processing. It is hard to understand what the person feels because of these challenges. Often people want to please so they say they are ok, when they are really not.
People with developmental disabilities have fewer relationships, and those they have may be more intense—e,g., the relationship with a parent. Death brings up fears of what will happen to me, where will I live, who will buy my clothes, etc.
We may underestimate how important staff are to people; we may not recognize there can be a significant loss when a favorite staff person leaves.
Signs of loss may include sadness and withdrawal, personality change, acting out, anger instead of depression. These signs may be misunderstood.
It is difficult to explain the concept of death or to prepare someone for a future death (they may think it will occur tomorrow).
Signs of grief may come much later—after 6 or more months. The delay may also be because the bereaved may expect the person to return—e.g., from vacation.
One of the worst scenarios is to not tell someone about a loved one’s death. The person will notice, and in the long run, may have a stronger reaction. It is helpful to explain what will happen, who will do things for the person. If appropriate for the person, coming to the funeral and cemetery can be helpful. Participating in a memorial ceremony—formal or informal—is also helpful.
Please see the attachment (to be sent next week) for more coping strategies and additional information.
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Dear Families and Self-Advocates:
Please complete the Developmental Disabilities Advocacy Survey if you have not already done so. Please use the link below to complete the survey.
NUMBERS MATTER! We will use the results of the survey to advocate to our legislators for needed services and supports. Help us reach more families and self-advocates. Please cut and paste the message below and e-mail it to other families and self-advocates.
THANK YOU
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STATEWIDE COALITION OF DEVELOPMENTAL DISABILITIES FAMILY ADVOCACY ORGANIZATIONS c/o Margaret Puddington ■ 562 West End Avenue, 2A, New York, N.Y. 10024 ■ phone 212-799-2042 ■ margaret.puddington@gmail.com
IMPORTANT: Please forward to other family members and self-advocates and to family and self-advocacy groups
Developmental Disabilities Advocacy Survey
Families and self-advocates can help set the advocacy agenda for the coming year by completing this brief Developmental Disabilities Advocacy Survey! Results of the survey will be used to identify the top advocacy priorities across New York State. Families’ and self-advocates’ top priorities will be shared with providers and provider associations and will be front and center of our statewide advocacy campaign to OPWDD and our elected officials to fight for what is needed!
Take 3 minutes to complete this survey today!
Please click on the following link and follow the directions to complete the survey: Developmental Disabilities Advocacy Survey
Thanks for participating!