To read Paul S. Aronsohn's 2018 Annual Ombudsman Report, click below:
If there is such thing as a traditional path into constructing an adult autism program, Moish Tov has not followed it. A serial entrepreneur with experience in the technology and medical device industries, Tov’s path to building an adult autism program emanated from his two children (who both have autism). Upon visiting various potential adult programs, he found himself disappointed: “I had the assumption that we would find a good solution - and a good solution for me is a place that allows them to live up to their potential, like any other person.”
After having conversations with parents experiencing similar disappointments with existing programs, he noticed that “21 is like a cliff. When you pass 21, you have to make a lot of decisions: about education, what kind of work you do, where you want to live. It’s a complex issue.”
Tov speaking at a recent meeting of the Post 21 Club.
Tov’s first experience building a skill-based program for people with autism was a program within the Israeli military:
“The Israeli intelligence community, the Mossad, had a problem. They didn’t have a good way to analyze satellite pictures. I knew that our kids - people with autism - they have their own strengths. Some of them have very good vision. So we put one and one together. We taught them how to read satellite imaging. We got them used to doing it, and we created a special environment for them, what we called an autism-friendly environment - and we got to work. And after four or six months, the results showed that they are three times more productive, and four times more accurate than their peers. So the Mossad said, give us more. Today they have 100. So that was the start.”
His experiences in Israel gave him clarity on building his own program:
“First, we decided that we’d focus on employment. So that they’d have a place that they could come and work, that they’d have people like themselves, they’d have a community and social life, and they’d have job training on a high level.”
On a recommendation from a family member of a participant, Tov organized a mammogram reading and analysis trial for adults with autism. The program remains in existence today.
“We have a small career center in Morris County and we’re going to bring one over here, and we’re teaching a group of 10 people how to look at mammograms. About 7 out of 10 are not verbal - we teach them how to compare the mammograms - they use a screen, and they mark differences between one and the other, and then the radiologist can do the diagnosis. It save a lot of time for the radiologist - because they can focus on the diagnosis and not the screening. It gives them 60% more time, and we are increasing the accuracy of the earlier diagnosis by 10 to 15 percent, which is quite good.”
He emphasized that the philosophy of JoyDew critically valued the cultivation of talent:
“We call this Talent and Career Development. We develop the talent of our members, and then the career side, we want to train them in about 15 different jobs, all of them technology and media related… We see that all of these adults have strengths - and when we talk about strengths, when you compare their strengths in these areas to their peers, they are competitive to their peers. They just need to have the right environment and the right way to train them to do the work and to deliver the work. And then they can do much better in certain areas than their peers.”
He elaborated on the ideas that underpin his beliefs:
“If you want to get people employed, you have to find their strengths. But you have to create the environment that will support their needs. And if you don’t create this environment, it makes it harder to succeed… If you treat them like a stigma, like there is no human being inside, you’re missing out.”
When asked to elaborate on his views, Tov compared the social and economic treatment of people with autism to his own experiences as an immigrant:
“I think the best example - and I am part of it - is immigration, the immigrant experience. When I came from Israel to the U.S., I had very bad English. You come, you’re full of knowledge, you just don’t have the ability to express it. And then people look at you as if you’re not smart, you don’t have potential. One thing that when I tried to communicate to people is to make the analogy between different groups.”
In closing, Too spoke about the critical role parents must play in the post 21 experience:
“This kind of effort is not done by one person. We need a village. And the village is the parents. Because the parents are the ones who care about it. We have to come together and agree about what were doing and do it.”
“We are building a new path. I haven’t seen a program like this. If I did, I most likely would’ve sent my kids there.” - Moish Tov
Q: “Why should I be interested in the Personal Preference Program (PPP)?”
A: If you and/or your relatives spend a significant part of your week providing caregiving services to your adult child who lives with Autism, the Federal government and NJ State can and will compensate all those involved, up to certain limits, as “employees” of the affected individual?
All that is required is completion of an application process, and filling out regular timesheets online. When one considers the amount of love, time, and effort that goes into providing care to the individual(s), being paid for these services can be a great help. What you should know and be aware of:
WHY PARTAKE IN THE PERSONAL PREFERENCE PROGRAM?
PPP enables affected individuals (“consumers”) to:
- Choose the services they need and want
- Hire anyone they want: relatives, friends, neighbors
- Design a service plan to meet their schedule
- Buy equipment, devices, make home modifications
- Exercise greater control, flexibility and choice over their personal care
ACCESS A CASH ALLOWANCE
An affected individual can use a cash allowance to:
- Purchase services from an agency
- Pay friends or relatives when providing caregiving
- Make modifications to the home, such as a ramp or chair lift, that help the Consumer live more independently
- Buy equipment, appliances, technology or other items that increase independence, such as a microwave oven, or front loading washing machine that the Consumer can reach from a wheelchair
DETAILS: Once families have established their Medicaid eligibility through an NJ Family Care Managed Care Organization/insurance company, they are eligible for Personal Care Assistant services (PCA).
These are non-emergency, health related tasks administered by NJ FamilyCare. Tasks include help with activities of daily living (“ADL”’s), and also household duties essential to the patient's health and comfort, such as bathing, dressing, meal preparation, and light housekeeping.
1. What is the Personal Preference Program (“PPP”)?
PPP is a way for affected individuals to receive Personal Care Assistant (PCA) services via NJ FamilyCare.
(Per the NJ Department of Human Services, NJ FamilyCare is not a welfare program, but rather the State of New Jersey's way of providing affordable health coverage for kids and certain low-income parents. See www.nj.gov/humanservices/dmahs/clients/njfamilycare/ )
2. Using a "Cash & Counseling" approach, along with the concept of "consumer direction," PCA services can be accessed under PPP, which allows seniors and people with disabilities who are NJ FamilyCare recipients to direct and manage their own services.
With a monthly cash allowance, participants - or "consumers" - work with a consultant to develop a Cash Management Plan (CMP). This plan helps them decide the services they need and the individuals and/or agencies they can hire to provide those services. Consumers who are cognitively impaired or unable to make their own decisions can choose a representative to make decisions on their behalf.
3. Financial Management PPP also includes Fiscal Management (FM) services to help consumers with the financial aspects of the program. The FM handles all enrollment and payroll responsibilities for individuals/agencies and acts as a bookkeeping service. They also visit every 3 months to monitor and manage services and ensure the safety and well-being of consumers.
BACKGROUND SUMMARY: The Personal Preference Program requires greater individual responsibility. But in return, it offers the consumers more control, flexibility and choice over the services they receive.
Horizon NJ Health
United Health Care
11A Quakerbridge Plaza, Mercerville NJ
(Mailing: PO Box 705 Trenton NJ 08625)
Personal Preference Program: An Overview
Earlier this week, Governor Chris Christie signed A-3824 into law. The law 'establishes Office of Ombudsman for individuals with intellectual or developmental disabilities and their families.'
From Lilo H. Stainton of NJ Spotlight: "Estimated to cost anywhere from $150,000 to $1.9 million annually, depending on its workload, the ombudsman and a limited staff would be responsible for helping individuals access appropriate federal, state, and local services; assisting them with communications with government agencies and dispute resolution, while serving as neutral arbitrators; identifying patterns of complaints and recommend improvements; and working with state agencies to better reach those they serve. In addition, the office would be required to report its work to state officials, the governor and the lawmaker each year."
April 19th, 2017
Margaret Gilbride, JD, CT, Instructor of Pediatrics, (Director of Transition, Employment, and Aging & Disability at The Boggs Center on Developmental Disabilities), spoke on the employment of individuals on the Spectrum.
An Event hosted by Ryan Roy, Autism Advocate. Ms. Gilbride graduated from Indiana University School of Law and is a certified Thanatologist through the Association of Death Education and Counseling. She has been an Interfaith Chaplin Intern at Overlook Medical Center and is now a member of its bioethics committee representing the interests of persons with intellectual and developmental disabilities. Additionally, Ms. Gilbride serves on a national committee, Educating Hospital and Hospice Providers on Healthcare Decision-making for People with Disabilities, the national board of directors for APSE: The Association of Persons Supporting EmploymentFirst, and the New Jersey board of directors for the state’s chapter. Prior to joining The Boggs Center, Ms. Gilbride worked as an Administrator, Research Associate, and Project Coordinator at the Indiana Institute on Disability and Community (IIDC) where she provided direct technical assistance on topics such as program evaluation, strategic planning, staff development, and issue-specific workshops and group facilitation to schools, provider organizations, governmental agencies, businesses, family groups, and advocacy organizations.
In addition to her responsibilities at IIDC, Ms. Gilbride has held positions as Job Coach, Program Manager, Director, Chief Operating Officer, and Executive Director. She is also a regular presenter at national conferences.
The Boggs Center
Liberty Plaza, 335 George Street
New Brunswick, NJ 08901
On May 24, 2017, from 6:30 pm 8:30 pm, Moish Tov and Marybeth Burtt of Joydew, LLC presented an informative seminar on the Joydew Strengths Assessment, or “S.A.” The S.A. stands in stark contrast to the current over-riding mentality of what people with Autism CAN’T do, in seeking to uncover what they CAN do. The S.A. is very much rooted in the D.I.R. methodology and philosophy pioneered by the late Dr. Stanley Greenspan of Washington University. Dr. Greenspan explored a number of categorized areas in which hidden skills could be sought. To the typical “lay-person” in Bergen County, D.I.R. may be thought of as “truly person-centered” programming for people with Autism. For example, what an individual may be very adept at may not be what he or she prefers to do as an occupation.
In addition to Strengths Assessment, the Joydew team also pursues “Total Communication”, acknowledging that people with Autism have varying modalities in which they are able (and also in which they prefer to) communicate.
The Seminar attracted 25 attendees, some of whom signed up for and underwent the Strengths Assessment with Joydew.
(By Beverley Roberts, the ARC of NJ)
June 2017: NJ FamilyCare - Important Information
It is important for families and staff to be aware of the necessity of completing the NJ FamilyCare renewal application if it arrives in the mail. The renewal application is mailed to those who already have Medicaid, and it is necessary for it to be completed and mailed back quickly, in order to continue Medicaid benefits. If this renewal application is ignored, the result would be the termination of Medicaid!
Please note that the term "NJ FamilyCare" is the same as "Medicaid." The "Aged, Blind, and Disabled" Medicaid program is one of the Medicaid categories in which many individuals with I/DD receive their Medicaid benefit.
Although a renewal application can be sent out as often as every year (depending upon the county in which one lives), some families may never have received a renewal application for their son/daughter's NJ FamilyCare/ Medicaid, while others may receive a renewal application every year. The NJ FamilyCare/ Medicaid renewal application is sent through the regular mail, at different times in the year, so if a family does not receive it, they should not be concerned.
Please share this information with others who may also be interested.
Beverly Roberts, Director, Mainstreaming Medical Care
The Arc of New Jersey
985 Livingston Avenue
North Brunswick, NJ 08902
Direct line: 732.246.2567; T:732.246.2525 x34; F:732.246.2567
Senate Majority Leader Mitch McConnell stumbles in drive to pass the Senate version of Obamacare “repeal and replace”. If the measure does not pass by July 7, the Nation faces a fork in the road- greater troubles, or alternatively the Republicans will be forced to work with the Democrats across the aisle in creating a truly bi-partisan Health Care Bill.
The Republican-controlled Senate continues on its drive to repeal Obamacare and replace it with new legislation which may threaten Medicaid funding to the Adults with Autism population, even after Majority Leader Mitch McConnell was forced to delay the Senate vote for a week and a half to attempt to sway and obtain more positive votes.
Should the bill eventually pass, and Adults with Autism see their Medicaid funding drop, it would be up to the Governors of the States to seek replacement funding through other channels in order to attempt to maintain the current much-needed funding levels previously put in place through Obamacare.
Post 21 Club will continue to monitor changes to the status of Federal Medicaid funding as it impacts the Adults with Autism population.
Readers are further encouraged to keep current with the Kaiser Foundation reporting on Medicaid
June 25, 2017: written by Post 21 Club
A tale of two Methodologies-
ABA: Since the 1970’s, families with Autism have scratched and clawed their way out of emotional devastation (and worse) toward something more palatable, to varying degrees, thanks to an approach stemming from the work of Dr. Ivar Lovaas, from that era. That approach is Applied Behavioral Analysis, or “ABA”.
Simplistically, ABA instructs that through a discrete trials “rewards” system, individuals with Autism can be “taught” or “trained” to subsist in the real world of their parents, and everyone around them. ABA further teaches that although the Autism Spectrum is wide, with a great variety of different manifestations of the disorder, the “cure” is the same: discrete trials with a “rewards” system. The system essentially impacts the wide variety of individuals on the Autism Spectrum in the same way, leading to relatively predictable results.
General complaints about ABA revolve around the observation that individuals tend to become “robotic”, although it is generally accepted to produce noticeable results. Another issue is that it requires “1-on-1” involvement for numerous hours/day, which is inescapably expensive.
DIR ®: The Developmental, Individual-differences, & Relationship-based model, or “DIR”, is an approach which is alternative to ABA. To paraphrase from the icdl website with founder the late Dr. Stanley Greenspan of Harvard and George Washington Universities: DIR is a way to understand individuals with Autism, and each other, that builds connections, understanding, love, communication, and engagement. Through this approach, the true potential of each person can be discovered.
An excellent overview of DIR/Floortime may be found on Wikipedia.
DIR incorporates a proprietary term called “Floortime”, which puts the principles found in DIR into practice. Combined with a special Strengths Assessment series of interviews with the family of an individual with Autism, administered by organizations such as Joydew, LLC of New Jersey (www.joydew.com), the chances of discovering the internal strengths, aptitudes, and future communications and career preferences are increased. DIR theoretically has the potential to “take our population to the next level”.