Margaret Puddington explained that the Manhattan Family Support Services Advisory Council (MFSSAC) is a subcommittee of the Manhattan Developmental Disabilities (DD) Council. The DD Council is made up of providers, government representatives, family members, and self-advocates. The mission of the DD Council is to improve the lives of people with DD and their families.
The MFSSAC is made up of family members and self-advocates. The mission of the MFSSAC is to inform families about new services and changes affecting services and to get input from families about their ideas regarding everything that affects the range of DD services. We welcome new Manhattan families—of all ages and with all types of developmental disabilities. We generally have a speaker at every meeting on a relevant topic relevant. Please join us.
Families are also welcome at the DD Council and all its subcommittees. The Family Support Services Committee discusses issues affecting services for families whose children are at home with them. The Transition Committee discusses issues relating to the transition of students from school at age 21 to adult day services. The Legislative Committee discusses critical advocacy issues that affect services for people with DD. (See item 2 below). The DD Council discusses current developments and challenges in the field, with reports from government representatives as well as the subcommittees. The DD Council also has speakers on topics of interest to the DD community.
Thursday, June 8, 2017, at 9:30 am – noon
SNACK, 316 East 53rd Street
Information: Marco Damiani (212) 947-5770 x 456; email@example.com
Next Manhattan Family Support Services Advisory Council
Tuesday, June 6, 2017, 5:30-7:30 pm
Topic: Medications That Can Improve Challenging Behaviors, by Dr. Peter Della Bella, psychiatrist
Birch Family Services, 104 West 29th Street (between 6th and 7th Aves.), 2nd floor training room
Information: Margaret Puddington (212) 799-2042
- Important Advocacy Issues – Margaret Puddington
Unlike school, which is an entitlement that is guaranteed to children, services for people with DD are not an entitlement. Even if you qualify for DD services, there is no guarantee you will get them. If there is a shortage of services or a shortage of funds, families may have trouble getting needed or desired services.
It is important for families to understand a little about the funding for services for people with DD and about legislation that could impact the funding. Over the past decades DD services in New York State have been relatively robust. Part of the reason is that this field has always had strong advocacy not only from providers and the state but also from family members. We families have been effective advocates for securing new funding and holding on to existing funding. Families have gotten new services developed and prevented budget cuts. We don’t always win, especially in the last decade, but we are successful a good deal of the time.
One critical advocacy issue is to raise the salaries of direct service professionals (DSPs), the people who provide hands-on care to our children. The field is experiencing real difficulties in recruiting and retaining DSPs because of the low salaries for this important work. We just recently achieved some success is gaining a small increase in DSP salaries, but it is not nearly enough to make a significant difference in hiring and keeping staff. It is essential that we continue advocating for higher salaries in the coming years.
The other extremely critical issue we are facing now has to do with Medicaid funding. First, some background information:
New York State has a comprehensive menu of services for people with DD: family support services and respite services, which you’ll hear about today, as well as residential services and adult day services of various types. The services are delivered through the New York State Office for People with Developmental Disabilities. Some services are paid for exclusively with state dollars—many family support services are paid that way. Other services are paid for by Medicaid waiver dollars, a mix of federal and state dollars. Medicaid pays for over 90% of services for people with DD.
Right now an effort is underway by President Trump and Paul Ryan, Speaker of the US House of Representatives, to do away with Obamacare and replace it with a new version of health care. A big piece of the restructuring is Medicaid. Medicaid is very expensive, and the new administration wants to cut costs by making it a block grant to states or a per-capita grant. Regardless of the details, what it means is that either way states would get a fixed amount of money and no more. It is basically a way to cut Medicaid funds by cutting the amount that states would receive. If there were to be a big cut to Medicaid, services for our children would be limited; some services could be eliminated altogether. This is a huge threat to our children.
Why is this important? Because all of us need DD services. All of us are in that same boat. If we want that boat to float, we must take responsibility to advocate. People who attend MFSSAC meetings will be able to stay informed of the most critical advocacy issues via e-mail alerts to make phone calls or send e-mails or come to rallys. Please respond to those alerts. It’s up to us to preserve what we have. Nobody will do it for us. If we don’t step up, nobody will.
Elly Rufer provided the first such alert: NYC Fair, a family advocacy group, is holding a meeting with Jason Helgerson, Monday, June 12, 6-8 pm, in Manhattan. Helgerson, is the NYS Medicaid Director. This is a huge opportunity that such a key person is coming to meet with families. It’s important to have a huge turnout for this meeting, to impress Helgerson with the numbers of families who care so deeply about preserving Medicaid funding for our children’s services. Please see the attached flier for details about the meeting.
- Speaker: Janet Davis, OPWDD: An Overview of Services for Families Whose Children Live at Home
Janet Davis is the Family Support Services Liaison for Manhattan OPWDD. Janet explained that the family support services program started in 1984. At that time Manhattan had 20 programs; now there are over 100 programs. Family support services are a variety of services to support families in keeping their child at home.
To receive OPWDD services, the individual must be OPWDD-eligible:
- The individual must have DD (including intellectual disability, neurological impairment, cerebral palsy, autism, epilepsy, traumatic brain injury, and similar conditions) AND
- The onset of the disability occurred before age 22 AND
- The disability must be likely to continue indefinitely or be lifelong.
To document the disability, the person must submit a psychological evaluation, a psychosocial evaluation, and a medical evaluation. School psychologicals do not usually contain the needed information.
The first step for people who need services but are new to OPWDD is to call the Front Door. The Front Door will determine the person’s eligibility, assess what services are needed, and authorize needed services. The Manhattan Front Door can be reached at 646-766-3220.
Janet recommended that while trying to access needed services, families get a small notebook and keep a record of their calls: whom did you speak to, what was the subject of the call/meeting, what did they say. This will help families to keep track of their contacts because over time, conversations, names, etc., can be forgotten.
Janet discussed the Manhattan Family Support Services Directory. This info-filled directory can be found on the website of the Manhattan DD Council: www.manhattanddcouncil.org. On that site, press Menu, then Resources, then FSS Directory. Janet pointed out that the Directory contains a useful list of acronyms, and a listing of general resources. She explained that the Directory is divided by types of program (for example: Advocacy, Recreation, Respite), with definitions of each type of program. All the programs provided through OPWDD are free. Other programs are also included in the Directory, and some of those have fees. Janet explained the different types of programs and gave examples of each. She encouraged the families to go home and explore the Directory for what they need. She especially suggested that families read about the “population served” and “description of services” to see which are appropriate for their child. Each program is different: some serve adults, some serve children, some serve people who are independent, some serve people with behavioral challenges.
Please see the attachments for additional announcements. MFSSAC handouts May 2017