1. Announcements: SEE BELOW
2. Update on 1115 Waiver
OPWDD held public briefing sessions and video hearings around the state during November. There was a good turnout for the hearing in Manhattan and, especially, in Staten Island. There were many speakers, and the same themes recurred frequently: people testified on the need for separate capitation rates for medical and long-term developmental disabilities services; keeping managed care organizations (DISCOs) solvent by mitigating financial risk; serving high-cost people appropriately; providing 24/7 residential care for all who need it, including new residential development; preserving traditional residential and day habilitation services for those who want them; ensuring choice of provider. Also, many people spoke about wanting CSS and self-directed services. Public input from the hearing will be submitted to CMS as part of the waiver application. OPWDD is writing a response to key issues raised at the hearing. [This is now posted on the OPWDD website: http://www.opwdd.ny.gov/2011_waiver/.]
OPWDD has issued a Request for Information (RFI) for pilot programs. Input is welcome. Go to: http://www.opwdd.ny.gov/2011_waiver/waiver_request_for_information.jsp . The purpose of the RFI is to solicit information that will contribute to development of the 1115 waiver pilot projects. The pilot projects will occur during the early years of the waiver and will demonstrate various mechanisms and processes for implementing the system reforms of the new waiver as envisioned by waiver design teams. OPWDD staff will use the information gathered through the RFI process to inform the Request for Applications (RFA) that will occur in 2012 and establish the pilot projects. People may answer whichever RFI questions they choose; it is not necessary to answer all questions.
OPWDD must submit its final application to the Centers for Medicare and Medicaid Services (CMS) for approval in order to begin the pilots.
3. New York Times Articles
On 11/6 the NY Times ran an article about deaths of people in NYS in state and nonprofit provider care from other than natural causes. One in 6 deaths in New York, or 1200 in past decade, were from unnatural or unknown causes, compared with Connecticut and Massachusetts where the number was one in 25. The article stated that NY state doesn’t track or thoroughly investigate deaths to spot trends and causes—for example, deaths from choking on food or drowning in bathtubs or falling. The article points out that evaluating these cases might have led to system-wide reforms and saved lives. The Times reviewed 222 cases of deaths from unnatural causes and found concerns about quality of care in half of them.
OPWDD is now addressing these issues. They are keeping better data on deaths and issuing alerts to the field when necessary.
In another article on 11/12, the Times wrote that over the past 10 years, OPWDD’s ombudsmen revealed whistleblower names to OPWDD. From now on, the ombusdsman function will be removed from OPWDD and placed under Commission for Quality of Care, in order to avoid any conflicts of interest.
4. Speaker: Mindy Friedman, Staff Attorney, New York Lawyers for the Public Interest, on Access to Health Care for People with Disabilities
New York Lawyers for the Public Interest (NYLPI) provides: client counseling, individual representation, litigation, education and training, and policy advocacy. They have a live intake system that can accommodate any language. They deal with medical care, housing, employment, transportation, language access, access to justice, community integration, and education.
Mindy’s presentation dealt with medical care. She explained that access to health care is a civil right. Certain key laws guarantee that right: the Americans with Disabilities Act, the Rehabilitation Act of 1973 (Section 504), the NYC Human Rights Law, and the NYS Human Rights Law. The types of barriers experienced by people with disabilities are: (1) physical barriers, for example: inaccessible architecture and medical equipment, and lack of staff training in adaptations for people with disabilities; (2) communication barriers, including lack of staff training in how to communicate effectively with people who have intellectual disabilities, lack of braille, lack of interpretation services; and (3) attitudinal barriers, including reluctance to serve people who are more “trouble” to serve.
What is covered by these laws? All federal, state, and city programs and services; recipients of federal financial assistance, such as hospitals that receive Medicaid or Medicare; places of public accommodation (any place that is open to the public, including private hospitals, private doctors’ offices, rehabilitation facilities, nursing homes).
Covered programs and services must provide equal access to their services to members of the public and their companions (parents or friends who accompany the patient). And covered services must make “reasonable changes” to buildings, services, and policies. “Reasonable” means that the accommodation does not create an undue financial burden, does not fundamentally alter the service, does not create a direct threat to the safety of others.
Examples of reasonable accommodation: providing braille or large print materials, installing a ramp, widening doors to exam room, providing accessible exam tables, altering policies (such as allowing service animals inside the facility).
Most providers do not know they are obligated to do these things. What can you do if you cannot obtain a needed accommodation? Be assertive; talk to someone in charge; write a letter; keep notes about what happened; file a complaint with administrative agencies such as the NYC Commission on Human Rights, the NYS Division of Human Rights, the Office of Civil Rights, and the U.S. Department of Justice.
The NYLPI Medical Access Project is conducting a health access survey citywide, using individual interviews, about the types of barriers experienced by people with disabilities and possible solutions. They will collect the data and produce educational materials. The Project also engages in structured negotiations with providers and potential litigation; some individual representation; and policy changes with recommendations now under development.
Throughout her presentation, Mindy invited our families to share their experiences, which they did. Mindy would like to hear other people’s experiences as well. To share your health care access experiences or problems with Mindy, or to participate in the health access survey, contact her at 212-244-4664 or mfriedman@nylpi.org.
Announcemets:
Manhattan Family & Professional Resource Fair
Thursday, December 1, 2011, 10:00 am – 2:00 pm
Church of St. Paul the Apostle, 405 West 59th St. at 9th Ave.
Info on services and supports from over 90 service providers.;
Family Support Services Committee
Tuesday, January 10, 2012, 10:00 am – noon (no December meeting)
YAI, 460 West 34th Street, 11th floor
Information: Amy Bittinger (718) 859-5420 x 234
DD Council
Thursday, December 8, 2011, 9:30 am
YAI, 460 West 34th Street, 11th floor
Information: Marco Damiani (212) 273-6188
Transition Committee
Wednesday, December 14, 2011, 9:30am – noon
P 79, 55 East 120th Street
Information: Kathy Kelly (212) 780-2724
Childrens Committee
To be announced
Information: Christina Muccioli (212) 780-2532
Legislative Committee
To be announced
Information: Judith DeIasi (212) 780-2667
Service Coordination Committee
To be announced
Information: Irina Tuchina (212) 273-6100 x 2418