1. Announcements: Committee Meetings See Below
Margaret thanked Sharon Nelson, who inspired this uptown meeting and helped to make it possible. We are also grateful to Assemblyman Keith Wright and William Smith, his community liaison, for arranging for us to meet in this wonderful space at the Harlem State Office Building.
2. About the Manhattan Family Support Services Advisory Council
Margaret explained that the Council is made up of families of people with developmental disabilities and self-advocates. Developmental disabilities include: intellectual disabilities (formerly called mental retardation), autism, cerebral palsy, epilepsy, neurological impairments, and similar conditions. The Council holds meetings where we have speakers on various issues affecting people with developmental disabilities and their families. The Council is an advisory body to the Office for People with Developmental Disabilities (OPWDD). And we advocate with our elected officials on issues of concern for people with developmental disabilities.
The New York State budget is of critical importance: the budget funds services for people with developmental disabilities through OPWDD. Our advocacy efforts generally center around the budget proposals. The budget process begins when the Governor releases his proposed funding in late January, but the Governor’s proposals are not final; they must be enacted by the state legislature by April 1 before they are implemented. The legislature negotiates with the Governor over the budget proposals. So our legislative efforts usually mean contacting our legislators in the intervening weeks to convince them to enact whatever budget changes we believe are essential. Our Council is sponsoring a Manhattan Family Advocacy Day, February 28, 2014, where groups of families visit their own legislators in their local Manhattan offices (not in Albany). In addition, the Manhattan Developmental Disabilities Council will hold its annual Legislative Breakfast on March 14, where speakers will tell the Manhattan legislators about crucial issues affecting services for people with developmental disabilities.
Our Manhattan Family Support Services Advisory Council will not have meetings in February or March in order to encourage our families to attend both Family Advocacy Day, February 28, 10:00 AM-2:00 PM, and the Legislative Breakfast, March 14, 8:00 – 10:00 AM. Please save those dates and plan to participate!
Every borough has a Family Support Services Advisory Council. For information about the Bronx Council, contact Tina Veale: tvveale@hotmail.com or 718-654-5513.
The Manhattan Family Support Services Advisory Council is a subcommittee of the Manhattan Developmental Disabilities Council. The other subcommittees are listed above. Families are welcome to attend any or all of these subcommittee meetings. See above for subcommittee meeting dates and locations.
3. Speakers: Family Support Services – What Are They and How Can You Get Them?, presented by Janet Davis, Manhattan Family Support Coordinator, OPWDD, and Kathy Kelly, Director of Service Coordination and Entitlements, AHRC NYC
Janet Davis explained that the local state OPWDD office, called a DDRO (Developmental Disabilities Regional Office), has just moved to 25 Beaver Street. Their phone numbers have changed.
Janet explained that OPWDD serves only people with a documented developmental disability, defined as: intellectual disabilities (formerly called mental retardation), autism, cerebral palsy, epilepsy, neurological impairments, and similar conditions. Developmental disabilities occur before age 22 and are expected to continue indefinitely. To document that a person has a developmental disability and is therefore eligible for OPWDD services, the person must have a psychological evaluation, a psychosocial report, and a medical evaluation. Medicaid will pay for these evaluations, but if your child does not have Medicaid, you can apply for reimbursement for psychological and psychosocial evaluations though AHRC (call Michael Wright: 917-715-8035 or Michael.wright@ahrcnyc.org) and you can get these evaluations performed at an Article 16 clinic listed in the Manhattan Directory of Family Support Services. You can find the Directory of Family Support Services online at www.manhattanddcouncil.org.
Janet explained that there is now a central point of entry to get services, called the Front Door. The Front Door will verify the person’s eligibility for services, assess the needs of the person, and authorize services for the person. If you are seeking services, call your borough’s Front Door: Manhattan 646-766-3220. Queens 718-217-6485. Brooklyn 718-642-8576. Bronx 718-430-0757. Staten Island 718-982-1913. You may also want to contact a service coordinator (see below) to guide you through the process.
Janet then took families on a tour of the Manhattan Directory of Family Support Services. She explained all of the types of services that are offered, which are listed in the Table of Contents, and explained that there is no charge for any state-funded services. Janet encouraged families to read about the types of services and their definitions and browse through the directory.
Advocacy : Advocacy services help persons with developmental disabilities and their families obtain the rights and privileges to which they are entitled.
Article 16 Clinics : These outpatient clinics provide a variety of medical, diagnostic, and therapeutic services for persons with developmental disabilities and their families.
Article 28 Clinics : These outpatient clinics provide a variety of primary and specialty health care and rehabilitation services for persons with developmental disabilities and their families.
Behavior Management : Behavior management is training for parents and caregivers of persons with developmental disabilities in how to manage difficult behaviors.
Benefits Assistance : Help in obtaining benefits, such as Medicaid or SSI, to which persons with developmental disabilities and their families may be entitled.
Case Management / Service Coordination : Case managers offer help in choosing and getting appropriate services for persons with developmental disabilities and their families.
Community Habilitation: Funded through the Home and Community Based Services (HBCS) Medicaid Waiver, community habilitation is a service provided in the home that assists the person with DD in developing skills in activities of daily living such as personal grooming, food preparation + social skills.
Crisis Intervention : Crisis intervention is emergency assistance with serious short-term problems, provided by professional staff, to persons with developmental disabilities and their families.
Family Training / Counseling : Family training is training for family members in communication skills, behavior management, independence skills, and advocacy.
Guardianship Information / Financial Future Care Planning : When a child with developmental disabilities becomes 18 years old, the parents are no longer the legal guardians. If your child will continue to need supervision and guidance as an adult, you may want to establish a legal guardianship before your child reaches age 18. You may also want information and advice on providing for your child’s future financial needs.
Housing Assistance/Home Modifications for Persons with Physical Disabilities : Housing assistance is help in finding and getting housing appropriate for persons with developmental disabilities. Home modification is help in fixing up the home to help people with physical disabilities become more independent
Information + Referral: Information + referral services provide information about programs and services for persons with developmental disabilities and their families.
Parent/Sibling (Brother/Sister) Support Groups:
Reimbursement Programs :Reimbursement programs pay for purchases or expenses related to the needs of persons with developmental disabilities. Families may be reimbursed for the cost of goods or services that are not covered by current programs, entitlements, or insurance.
Respite: Emergency: Emergency respite is temporary care of an individual with developmental disabilities provided on an emergency basis due to a family situation of extreme urgency.
Respite: In-Home : In-home respite is temporary care of a person with developmental disabilities, provided in the home by a trained respite worker.
Respite: Overnight/Extended Stay : Overnight or extended stay respite is temporary care of a person with developmental disabilities, provided at a respite center or a family care home, by trained respite workers.
Services for Persons Who Are Physically Disabled, Medically Fragile, or Chronically Ill
Socialization Opportunities for Individuals with a High Level of Independence : These programs are for individuals who have developmental disability diagnoses such as Asperger’s Syndrome, Learning Disabilities, and Tourette Syndrome, but don’t necessarily meet OMRDD eligibility due to their level of independence.
Specialty Skills Training: Training programs that teach individuals with DD specific skills to encourage independence, e.g., travel training, toilet training, socialization skills, independent living skills.
Technology Related Programs: Programs that assist a person to identify, acquire, and learn to use appropriate technology (high or low tech) to improve communication or independence.
Waiver Services
Eligible persons with developmental disabilities and their families may apply for a variety of family support services.
Kathy Kelly then explained the Medicaid waiver, called the Home and Community Based Services (HCBS) waiver. The HCBS Medicaid waiver is a funding stream; it pays for certain services. This waiver waives certain rules: for children under age 18, their parents’ income is waived (does not count) in determining eligibility for Medicaid; only the child’s income is taken into account. For people over 18, only their own income counts. Once a person has Medicaid, s/he can get clinical services such as occupational therapy, physical therapy, or any other service Medicaid funds.
A person must have Medicaid to obtain certain waiver services, such as respite and community habilitation (see definitions above). The waiver also funds “Consolidated Supports and Services,” which enables an individual or family to manage the person’s own budget and to hire his/her own staff. You will find more information about this service online at opwdd.ny.gov; type in “Consolidated Supports and Services” and contact your borough’s liaison. See the Waiver section in the directory for a complete list of waiver-funded services.
Up-Coming Meetings:
Family Support Services Committee
Tuesday, January 14, 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, January 8, 2014, 9:30am – noon
AHRC Fisher Adult Day Center, 2080 Lexington Avenue @ 125th Street
Information: Kathy Kelly (212) 780-2724; Kathy.kelly@ahrcnyc.org
Legislative Committee
To Be Announced
Information: Jim Malley (212) 928-5810 x 101; Jmalley@esperanzacenter.net
Children’s Committee
To Be Announced
Information: Christina Muccioli (212) 780-2532; Christina.muccioli@ahrcnyc.org
Service Coordination Committee
Friday, January 24, 2014, 10:00 am – noon
Topic: Eden Ruiz, UCP NYC, on home modifications
80 Maiden Lane, 2nd floor conference room
Information: Carol Lincoln (718) 859-5420 x 225; Clincoln@ucpnyc.org
DD Council
Thursday, January 16, 2014, 9:30 am
YAI, 460 West 34th Street, 12th floor
Information: Marco Damiani (212) 273-6188; Marco.damiani@yai.org