Disability In Focus – The New Jersey Council on Developmental Disabilities

Sex Education: An Effective Way for Young Adults with All Types of Disabilities to Remain out of the Criminal Justice System

admin — Tue, 16 Jun 2015 12:44:53 +0000

By: Kelly Stout, Transitional Specialist The Arc CARES Program – The Arc of New Jersey Even though they may learn differently, people with intellectual and developmental disabilities are intelligent in their own way. Therefore, I believe people with disabilities have the right to learn about sex education. For people with disabilities, there are many benefits to learning about sex education:

Learn about the opposite sex
Reduce vulnerability
Protect oneself from victimization

However, some parents of children with disables do not share these same positive ideas about sex education. In the article, “Sex Education: Effort of Parent and Teacher”, some parents of children with disabilities have varying opinions regarding sex education (Kempton, 531-534). The Criminal Justice System’s Role in Providing Sex Education to People with Disabilities: Although this article does not focus on offenders with learning disabilities, in her article, “Young people with disabilities who sexually harm others: the role of the criminal justice within a multi-agency response”, Rachel Fyson makes the good point that professionals who work in the criminal justice system must be proactive in ensuring that offenders with learning disabilities do not inflict harm on additional victims (Fyson). I think that all staff within the criminal justice system should help all offenders with disabilities to prevent harming others. In today’s day and age, it is more important than ever for people with disabilities to get sex education, so that they can realize a situation in which someone might use sex as a way of taking advantage of them. Dedra Hafner from The University of Wisconsin-Madison’s University Center for The Excellence on Developmental Disabilities shares this perspective. In her “SAFETY Awareness to Empowerment”, Hafner stated that without proper sex education, people with disabilities become perfect targets for victimization (Hafner, 19). For those that are interested in reading Hafner’s Safety Empowerment Manual in its entirety, the link can be found here: http://www.waisman.wisc.edu/cedd/pdfs/products/health/SAFE.pdf Sex Education: A Way for People with Disabilities to Stay Out of The Criminal Justice System: Although sex education has a specific purpose in high school classes, sex education could also be used to teach people with disabilities about the dangers of the criminal justice system. A person of average intelligence has the ability to view our criminal justice system in an objective manner. To such a person, the Criminal Justice System upholds the law. However, to a person with a disability, the criminal justice system would appear threatening. Therefore, sex education should be used to not only teach people with disabilities about the criminal justice system in general, but also about how to stay out of the criminal justice system altogether. Sex Education for all: A Preventative Measure for Reducing Crime: When I had started working for The Arc CARES Program, the first of many objectives was to create The Arc CARES Needs Assessment. The purposes of The Arc CARES Needs Assessment was to identify the gaps in service for offenders with disabilities, and then to assess the needs of those individuals. One of the gaps in service is the lack of sex education that is offered to people with disabilities. If sex education can be taught to more people with disabilities and people with mental illness, there would be fewer of such offenders. Sex Education for people with Mental Illness: As I consider the diverse group of professionals on The Arc CARES taskforce, I consider offenders who struggle with Mental Illness, and how they would benefit from learning about sex education. While they most likely learn similar things as people with intellectual and developmental disabilities, people with mental illness, when learning about sex education, learn how to differentiate between their fantasies regarding sex and its actual reality. Working for The Arc CARES Program, A Wonderful and Thrilling Opportunity: From working for The Arc CARES Program and with The Criminal Justice Advocacy Program, I have learned a great deal about the repercussions of withholding sex education from people with disabilities. Working for The Arc CARES Program, and with The Criminal Justice Advocacy Program, I have a full appreciation for sex education in all special education classes. I am so thankful and grateful to The New Jersey Council on Developmental Disabilities for the wonderful opportunity to work for The Arc CARES Program. To have gained and acquired this work experience is truly an opportunity of a life-time. It has been my pleasure working with NJCDD Deputy Director, Shirla Simpson, NJCDD Grant Manager, Dolores Roselli, CJAP Director, Jessica Oppenheim, Esq., and The Arc CARES taskforce Members. Before our grant concludes on October 30th of this year, The Arc CARES Program is hosting two training workshops for direct care providers. The purpose of these workshops is to educate direct care providers on how to work with offenders who have intellectual and developmental disabilities. The first workshop will be held on Tuesday, June 23rd at The Arc of Atlantic County from 9:00 A.M. to 4:00 P.M. The second workshop will be held at The Camden County Voorhees Library from 10:00 A.M. 3:30 P.M. The Arc CARES Program has hired Dr. Beverly Frantz from The Institute on Disabilities at Temple University as our Training Consultant for these two training workshops. We thank Dr. Frantz, The Director of The Arc of Atlantic County, Patricia Jones, and The Director of The Arc of Camden, Peggy Englebert for all of their support with these training workshops. References:

Kempton. “Sex Education: Effort of Parent and Teacher” Pages 531-534.
Hafner, Dedra. “SAFETY Awareness to Empowerment”. http://www.waisman.wisc.edu/cedd/pdfs/products/health/SAFE.pdf.
Fyson, Rachel. , “Young people with disabilities who sexually harm others: the role of the criminal justice within a multi-agency response”.

Parents with intellectual and developmental disabilities (I/DD)

admin — Thu, 04 Dec 2014 13:23:42 +0000

by Alison Lozano I am clearing out my office in preparation to retire at the end of January. During that process I have discovered many pieces of paper that I have not looked at in many years, most of them are being deposited in the recycling bin. However, while accomplishing that clearing out task I found one important document that unfortunately I have not looked at in several years, my dissertation. In 2000 I presented my dissertation to the faculty of the Graduate School of Social Work at the University of Utah. It is just 151 pages, but it represents four years of travelling to three states, writing, rewriting, conferring with faculty, presenting, rewriting again and then defending. Having lived through that experience it is not hard for me to believe that approximately 50% of PhD students do not complete their dissertation within 10 years of finishing all coursework. The reason I am disappointed that I have not looked at it in several years is that it is an incredibly critical topic. The issue it studies has not been solved or significantly ameliorated since I researched and wrote about it between 1996 and 2000. There are still several thousand children every year who are removed from their parents, or never go home from the hospital after birth, simply because the parents have a diagnosis of mental illness or intellectual disability. When I completed my literature review for my research I found very little information on parents with I/DD. Fortunately now there is more research and information about the topic. One organization in particular, Through the Looking Glass, has a very good program and has completed valuable research on parents with I/DD. Approximately nine years ago an organization was formed that concentrated and brought attention to the issue, the Association for Successful Parenting. Despite the modest advances and attention that has been given to parents with I/DD over the past 10+ years, I suspect the findings from my research are still applicable. Several of the problems I identified that parents with I/DD face are poverty, abuse inside and outside their relationships, lack of self-esteem, poor reasoning skills and problems disciplining children. The parents who were the most successful were those who had resources and supports. In particular I found that if the parent(s) had at least one person in their life who assisted them both manage their daily life and their children, they were much more successful than those who were not supported. One mother in particular lived in an apartment complex with her son, who had learning disabilities. She had gathered around her people who assisted her in raising her son. The manager of the apartment complex watched out for her son when he was outside the apartment. The school bus driver would advise her if he was not dressed appropriately for the weather or if he seemed sick enough to stay home. The local church members took her shopping. Her caseworker made sure her bills were paid, public assistance forms were filled out and regular medical visits were accomplished. With the help of these formal and informal supports she was raising her son very successfully. She was a very devoted mother and it showed by the respect and love her son showed her. As a society we have determined that people with I/DD have the right to live a life that parallels the lives of everyone else. It would follow that people with I/DD would also want the relationships that most people enjoy, and sometimes that includes children. As a society we need to address the supports the families need to raise their children because often they are very dedicated and loving parents, they just need some help with the everyday responsibilities of child rearing. Taking the children away from their parents is not usually the answer. It results in children being raised in the foster care system and parents who grieve for the lost opportunity to care for their offspring. The supports parents with I/DD need to raise their own children depends on their individual needs and their living circumstances. As with all other social services, each family needs to be thoroughly evaluated by a system that is more committed to enriching people’s lives than cost cutting. An ideal model is the one in Sweden where the children(ren) and parent(s) are fostered by another family where the parents do not have intellectual disabilities. On the other hand, some families may just need help with paying bills. It is critical to do whatever it takes to try to keep the families intact. I expect I will find and read my dissertation again in the next few years. I hope when that happens I can go on line and discover that services and supports for parents with I/DD have improved greatly and there are more parents who are parenting their own children. But this will only happen if our budget decision-makers, social service system and communities see this as an important issue. Alison Lozano, PhD

What Are We Waiting for? Waiting Lists and Community Infrastructure

admin — Mon, 27 Oct 2014 13:40:53 +0000

by Norman Reim What Are We Waiting For? Waiting Lists and Community Infrastructure There are still waiting lists for residential supports for people with developmental disabilities. We say we don’t like the fact that they are waiting. We should be even more concerned about the systemic problems in the broader systems of support they are waiting for. According to a report from UCP national released earlier this year there are 268.000 waiting now as compared to 137,000 in 2007. As we’ve all said time and again, this is a trend that does not come as a big surprise. With populations aging individuals with developmental disabilities are living longer and healthier lives, unquestionably a good thing, but the same time marching for them in their advancing robustness is marching on for their families and taking the toll all that marching does. Also, in a trend that should be less of a given but seems to be so more and more these days, public dollars for support of residential supports is being perpetually ping-ponged in ongoing politically charged budget battles. Finally, there has been a long, slow but consistent movement toward supporting individuals with developmental disabilities as such; as individuals with their own discrete needs and desires, not defined by their connection with a group of other people, including their families. That’s a good thing, but it does put additional strains on the systems as funders and providers struggle to support older models while attempting to promote the newer ones. So, while the staying power of waiting lists is predictable, it is still a concern, but often for different reasons than in the past. As usual, caught up in the middle of the all the studies and politics are people with developmental disabilities and their families who are simply trying to manage their daily lives and plan for an uncertain future. The waiting list in New Jersey used to be a flashpoint. Waiting families came out to testify at public hearings. Budget campaigns centered on the plight of aging parents struggling to care for a son or daughter with severe and profound developmental disabilities. Images of elderly individuals and couples with their children, often times visibly in need of significant physical caretaking, promoted public outrage with lawmakers promising to see the list ended once and for all. All that’s pretty much died out with the waning of traditional press coverage and a shift in the way the state’s Division of Developmental Disabilities manages the waiting list. Some of that’s good. The whole obsessive focus on the waiting list became a fulcrum for leveraging money for community services. Perfectly legitimate as such but it ended up being a distraction. As stories usualluy do it simplified a complex set of issues. It was incomplete and masked the systemic problems that have continued to grow. Many of the people on the list didn’t need or want services anytime in the near future. Those with really urgent needs were dependent on the much more complex problem of the broader funding issues, made worse by continuing to run running large institutions at the expense of the community infrastructure and the state’s ongoing revenue roller coasters. The state, to its credit and in line with national trends, has moved toward managing the people on the list now that the hyteria to get rid of it has died out. The current goal is to move people off the waiting list and onto the Community Care Waiver CCW). The CCW is how Medicaid funds residential placements in community homes—waving the institutional bias written into the original Medicaid laws. Once that happens the recipient can get in-home supports or, theoretically, an out-of-home situation. As discovered when the waiting list started to be examined more closely, many people signed up for it because of the fear of the long waits but were not ready for any move. So now, much of the individual and family choice on how to use the CCW support is based on what they want and need at that time. That’s good. But it is also true that the state community infrastructure is a bit of a mess. There are some serious long term investments that have been on hold for many, many years and providers are past feeling the pinch. Last I heard they had to make some serious management choices daily around physical plant needs, staffing, extras, all the stuff that makes a supported home work. So, while it’s true that most of the people opting for in-home supports genuinely want to keep their situation as is, there is no doubt a reluctance to choose an option that is lacking. For the long term sustainability of this CCW plan, significant investments would need to made if there are going to be appropriate out-of-home living options for people when they are ready for them. The state tells me there are 100 to 150 people coming off the waiting list on to CCW a year on average. Last year it was 173. Of those, 90 now receive in-home support; 26, residential and support; and, 57 declined any new services. They contact more than 300 in order to add about 130 onto the waiver. According to them there is always a high number who decline services or have moved. Some take a long time to decide on what they want and need. Life goes on for all of us whether ideally or not and we all need to roll with our own behaviors as well as that of others. Bottom line though is that as of March 2014 there were 3,789 people on the priority waiting list for the Waiver. Priority—it used to be called Urgent back when—means that both parents are over 55 or there is a specific circumstance that needs to be addressed with that family more urgently. As a side comment I think that in this day and age we should be able to know which situations are truly urgent and which not. Having both parents over or under 55 doesn’t mean much. We all know parents in their 30s in situations that are dire and those in the 60s who are doing fine. A topic for another day. In that March snapshot the general portion of the waiting list was 2.801. There doesn’t seem to be much specific info about them. That’s a resource issue I realize. But I wonder who they are and what their situations are. It is also interesting in a worrisome way that the priority number is nearly a thousand more than the general. May not mean anything but it may also be another minor caution of continued rising need. Also, nearly 20 percent of the individuals on the list are children, including those who signed up before the transfer to the Department of Children and Families. They are all wanting to not get left behind. They want to be considered for the supports and housing they will need through the years. Getting on the waiting list or getting on a federal funding stream is only helpful however if appropriate services are available. If they aren’t it’s only a paper moon. No matter how long someone has been on a list, what their designation is or what series of letters the funding source uses as its designation, if there is not a reasonable home to live in with competent, caring appropriately paid support staff, and competent, enthusiastic public employee staff to manage the coordination and oversight of those services and supports, it’s not going to work. It’s that simple. There needs to be a long range plan for shoring up the state’s community infrastucture so that it can best serve those currently in need of its support and will be ready for those relying on it to be there for them later. If there is such a thing I apologise for having not yet heard about it. If not, I repeat, there needs to be. What do you think?

Case Management and the Loss of a ‘Personal Touch’

admin — Fri, 05 Sep 2014 13:44:29 +0000

by Alison Lozano I am an “old world” social worker and possibly that is why I have some real concerns about how the practice of social work has lost ground over the past few years, in particular as it relates to individuals with developmental disabilities and their families. The changes have come about slowly as the social service system has shifted away from social workers being on the front lines of direct services for families and towards case management and managed care. Unfortunately, this shift has created a huge void for individuals with developmental disabilities and their families. Traditionally, social workers are not only a social service and community resource for people but they have the skills to assess family dynamics and treat dysfunctional behavior. As a new social worker in the 1970s, I traveled many miles from the state school where I worked as a community caseworker. I visited with families who had applied to the state school for placement, but my intervention very often stopped the institutional placement. Often, all the families needed were someone to offer them alternatives and choices to crisis situations that, not surprisingly, we are still seeing today. These situations include: parents growing old or sick, thus rendering them unable to take care of their loved one with developmental disabilities; a family crisis that needs a short or long term intervention; behavior problems brought on by change or stress; and, problems of social and economic isolation. As a trained social worker I had the skills to evaluate the situation and offer immediate assistance or counseling to ameliorate the problems. I also had the community resource skills to manage the complicated social service system on their behalf. I often intervened on the individual or family’s behalf with their natural supports, using the community rather than the social service system. The focus of the intervention was seeing the person in their natural setting and problem solving within that system. Over the past few years when accountability and cost saving became the mantra for social service systems, the focus of service to families is to do it as cheaply as possible. Thus social workers have been replaced by case managers and often they are nothing but a voice at the end of a telephone. Usually, case managers are minimally trained because their primary function is making sure the paperwork is in order and the rules of the agency are followed. A home visit is a thing of the past and individual assessments take place in an office or over the phone rather than in the person’s home. As we move towards a new paradigm for social service provision, it is imperative we do not take the ‘personal touch’ out of our contacts with individuals with developmental disabilities and their families. The families are not just numbers on a list, they are a combination of problems, concerns, abilities to cope and impossible situations. Each family needs that individualized attention from someone who has been trained to deal with psychosocial dynamics and intervention strategies. We cannot allow families in distress to have their only contact be a letter once a year informing them of their number on a waiting list, and an informal voice at the end of a telephone. It is short sighted to think we are saving money by not investing in social work services. Social workers are often the very people who can prevent situations from becoming an expensive crisis because they have the skills to intervene. For the sake of the individuals and their families our social service system must reverse the trend of depersonalizing interactions with constituents in the name of cost saving. We must individualize the way people are served so their lives are enriched and fully supported. In order to do this I would suggest we seek out social workers in training and offer them incentives to choose developmental disabilities as their specialty. Have these trained individuals develop professional relationships with individuals with developmental disabilities and their families and fully support them with whatever means works for that particular family. Without a doubt this type of investment will result in individuals and families who are less frustrated with the social service system, happier with their lives in general and may result in fewer people needing extensive and expensive social services. In addition to enriching people’s lives, that would probably qualify as a cost cutting measure! – Alison Lozano, Ph.D., M.P.A NJCDD Executive Director

Family Support: Struggling for a New Identity

admin — Thu, 14 Aug 2014 14:00:04 +0000

by Norman Reim

Family Support is Struggling for a New Identity

The New Jersey State Regional Family Support Planning Councils were a force in the DD system during the 1990’s and early into the 2000’s. The activities of the nine regional councils ranged from active and engaged, to militant and scattered, to rebuilding and dormant. But the overall effect was one of local councils made up of families of individuals with developmental disabilities using their voices to try to steer public policies so that they better fit the needs of those individuals and others like them, and their families. In those days it was easier to stay focused because the guidelines for involving families in policy and funding decisions were evolving and needed to be directed. Much of their work was concerned with providing information to the families in their respective areas, recruiting people to get involved, drafting advisory recommendations and, for some, watchdogging the state to ensure the philosophy behind the Family Support Law was being adhered to. That philosophy is simple. Since families are the primary caretakers of their children, when they are children, and the caretakers in many instances or primary advocates throughout their shared adult years, they are uniquely qualified experts in their own family situation. Once the councils became fully established and the yearly recommendations to the State Division of Developmental Disabilities about funding priorities and policy directions became more routine the mission seemed to fragment. Although the councils still informed families in their areas and submitted their annual reports, there was a letdown. The kind of letdown that comes with a degree of success. The councils were in the process of reassessing the urgent issues of the day, which were shifting from respite and resources for those caring for family members at home to the crumbling infrastructure of the community system and the ongoing funding fluctuations at the state and federal levels. The lack of health care providers and the struggle to attract and keep community support workers were reaching crises out in the community. Individuals and parents continued to get older and many families who had been the primary caretakers could no longer do that. The councils had been in the process of discussing these issues when the proposal to move the responsibility for children with developmental disabilities to the Department of Children and Families (DCF). That was January 2013. Since then Family Support has been scrambling to figure out the differences in the new system and get a seat at the table there. DCF works very differently from DDD. The department is based on a model of crisis intervention, while DDD has always provided long term services to those who need them—most often throughout their lives. These differences are significant but in no way insurmountable. In fact, merging the two mindsets in these cases might benefit both agencies. Children and adults with developmental disabilities certainly have short term crises and children and their families in crisis can have long term needs. Family Support Councils could bring a lot of experiential expertise to these planning discussions. I made the point in a previous post that it could truly benefit the new efforts at DCF to promote a cultivation of Family Support-based advocacy. I’ll say it again. Sure, a group of parents, all with their own agendas and varying degrees of experience and knowledge, is a messy structure. But it introduces a frontline perspective that is sorely lacking in larger organizations like DDD and DCF. We need to find ways to keep a formal structure for those voices to be heard, for both children and adults with developmental disabilities.

Special Education: Bogged Down Like the Rest of It

admin — Thu, 24 Jul 2014 14:42:07 +0000

Special Education is in need of an overhaul. There’s a ton of money involved and, more importantly, the quality of the education of students with and without disabilities is at stake. Like all other education, special ed is administered and funded largely at the local and state levels. However, for special ed the federal IDEA (Individuals with Disabilities Education Act) is the primary ruling piece of legislation. IDEA drives the policy but accounts for less than 10 percent of the funding, the rest coming from state and local governments. There’s a very complex funding formula that’s like a gumbo of past funding levels mixed with state’s overall student populations and special ed populations stirred in with poverty rates and spiced with “hold harmless” provisions for smaller states so they aren’t trampled on by the big boys in our complex federalist/state rights system. I know there are some people who understand it. We have some of them right here in New Jersey. I know some of them and they certainly seem like they know what they are talking about. But they can’t explain it so anybody else can understand it. I know. I’ve listened hard and read a lot. I can get some of it but most of it reads like something out of the German author Franz Kafka, who wrote about how easy it is to get lost in our own complexities. I stumbled across an analysis of special education recently from a group called New America. http://education.newamerica.net/sites/newamerica.net/files/policydocs/IDEA_6_26_2014_FINAL.pdf They offer good insight into how funding and policy legislation has stagnated lately at the federal level and how that stagnation has led to wide varieties in special education programs across the states. It’s worth a look but what stood out for me at first glance, for this blog post, was how much the weight of the law’s complex formulas and layering was contributing to the bogging down. Just one paragraph lifted out of the report shows what I mean. “If Congress appropriates funding that exceeds or matches the amount provided in the prior fiscal year, the awards are made according to a separate funding formula. Every state is guaranteed at least the amount it received in the prior year under §611 of Part B of the Individuals with Disabilities Education Act. However, any funds Congress appropriates above its fiscal year 1999 appropriation are distributed on the basis of both population and poverty. It uses the same formula as in the 1997 version of the law: Eighty-five percent of the funds are distributed according to each state’s relative share of all children ages 3 through 21, and the remaining 15 percent are awarded according to each state’s relative share of those children living in poverty. To determine the poverty level, the Department of Education uses data from the U.S. Census Bureau.26”. It goes on to say in the next sentence: “The system is not as simple as it sounds.” Oh really. When public policy becomes too convoluted for anyone but an elite group of experts to understand it becomes private policy. That has happened a lot in federal and state laws and policy initiatives. None more so than special education. We don’t really overhaul laws anymore. Probably never did. Read the opening few pages of Bleak House by Charles Dickens to get a description of what happens when you pile updates on top of older updates and laws upon laws. It begins to look like buildings in the Old Bailey section of 19^th Century London with its mass of convoluted structures and winding alleyways. It is hard enough to get new legislation passed. The specter of trying to monkey around with existing laws, especially ones as complex as those around special education, with all the sacred cows and entrenched interests, is daunting. It almost makes the stagnation is understandable. But not acceptable. There’s too much at stake. When our public discourse is not plain spoken it is too easy to hide things select groups want to insert but don’t want anybody else to know about. In the case of funding and policy legislation it usually means that one constituency is going to get to keep what they have or have it expended and another is going to lost something or continue to be left out. Politicians don’t like to plainly ask for sacrifice or admit to favors. For instance, at least as far as I can understand it, federal funding, which seems to drive state and local policies in special education, still rewards over classification. The more kids you say you have that need special ed services the more money you get for those services. That makes sense on one level but many thoughtful professionals and advocates believe that over classification is not only bad for students but drain much needed resources, ensuring finite dollars are best spent in the best ways. Nearly 60 percent of all special ed students are classified as having learning disabilities and speech and language impairments. Minorities have long been disproportionately classified into special ed classes. Many funding decisions at the state level are also based on “need” and so there are local district incentives to bolster those numbers come appropriations lobbying. However unconscious or well-meaning these decisions are they are bad for the students misclassified and bad for the others students as well in terms of balances in funding distribution. Need is certainly a legitimate criteria for any activity. Fiscal and policy experts in and out of government have been working to balance these concern. But as so often happens, new ideas have been layered on top of the more outmoded ones. As with many complex laws there has been no major effort at a comprehensive overhaul. Even an investment in a cleaning up IDEA for language and duplications, provisions that directly contradict each other and ones that apply to outmoded philosophies would be helpful. Congress has still not reauthorized IDEA, languishing in that limbo since 2009. I think in part it’s because of that complexity plus the political paralysis. It is too much the tackle and so nothing is done. Major reforms are hard work. They’ve become too scary to contemplate. Like dredging you never know what’s coming up. Nobody’s ever happy about the end result. Look what happened with the Simpson Bowles Commission report on the overall federal budget, balancing revenues and expenditures. Everybody wanted it to be everybody else who compromised and sacrificed—not them and their constituents. The haves want to keep what they have and the have nots keep getting a shorter end. Until we decide that we are going to fully fund broad societal initiatives, like special education—which had never been fully funded according to the formulas—this will be the case. And unless we agree to take on a comprehensive, objective, critical assessment of the efficiency of the whole system and ask people who are getting too much to give back so that people who are getting too little can be better served, it will break the bank. In the meantime, there are millions of students out there and many more millions of parents who simply want the kind of educational experience for their children we have already determined is a societal obligation to provide. And that societal commitment seems to be pretty universal, certainly in the abstract (local tax grumbling singles and seniors notwithstanding). Admittedly, those experiences will be vastly different with vastly different outcomes; and should be. But they can and should be founded on the simple overarching concept of offering a free and appropriate for our children.

Employment of Individuals with Disabilities

admin — Fri, 11 Jul 2014 18:41:40 +0000

I recently attended a one-day conference on employment of persons with disabilities. What made this conference different were the participants. The audience was made up equally of individuals in private business and those who work with people with disabilities who are seeking employment. Unfortunately there were not many individuals with disabilities or their families in attendance. There were two types of employers present. First, huge corporations that have made a concerted effort to hire a significant percentage of people with disabilities. These are companies like Walgreens and TJX, the parent company of TJ Maxx, Marshalls and Sierra online. Second, small companies that hire just one or two people. At the meeting this group was represented by a local drug store, a garage, and a credit union. The huge corporations have made admirable strides in making accommodations for people with disabilities such as pictures instead of written signage, sit-down stations, water back-packs for those who need frequent hydration, conveyer belts that move up and down and building directions painted on the floor. But the people who go to work for one of these huge companies have to fit into the corporate model. The company develops the accommodations and the people with disabilities are hired according to their ability to function in the job with the available accommodations. The smaller companies that hire one or two people with disabilities tend to ‘carve out’ a job within their respective settings. That is, they create a position according to abilities and needs of the person. It is much more personalized and they depend on formal and informal job coaches to support the person in their job. Neither of these models is better or worse than the other. However, they both don’t work for everyone. That is why those of us who seek employment for people with disabilities need to be sure the individual is placed in a setting that fits them, taking into consideration their abilities and comfort level. All of us want a job we like and can do well, it is no less important for people with disabilities. One more thing. I always cringe when I hear employers refer to people with disabilities as “reliable” and “always cheerful.” Those terms keep coming up. It has always seemed so patronizing and paternalistic to refer to reliability and cheerfulness as the primary consideration for hiring a person with disabilities. But, as I sat in this meeting and heard employer after employer cite these two qualities, I thought maybe we should use this to our advantage. I bet someone could come up with a neat slogan that we could use to capitalize on these descriptors. Alison Lozano, PhD

Whose System is it Anyway

admin — Sat, 31 May 2014 18:40:14 +0000

A few posts back I talked about some aspects of the Big Business of Disability. I want to talk some more about that. Before it had been the over prescription of medications that got me going. That’s created, in part, by a profit driven system where the “diagnosis,” for want of a better word, is made because there is a drug to prescribe rather than that’s the best thing to do for that particular individual at that particular time. As I said before I believe that is a symptom of trying to fit a nonprofit model into a profit one. The two clash at a number of points. However, it is also a symptom of clashes that still happen between professional providers and those they serve. That relationship has improved tremendously over the years but still has some gaps that would benefit from further discussion. The relationship between professionals and the public they serve is a complicated one that heavily affects the developmental disabilities system, as well as many others where health care and personal supports are involved. On the one hand, the receivers, in our case individuals with developmental disabilities, their families, friends and close advocates, believe they should be heavily involved in the decisions about what they have and will be receiving in the way of services and supports. Since they are the ones who will be living with the consequences their input makes a lot of sense. But most of them lack the education and professional experience to meaningfully delve into the incredibly complex formulas around public funding and the distribution of those funds throughout vast networks of service providers. On the other, those with that education and experience are often far removed from the daily lives of those most affected by their decisions. Groups like the Council, and some few others, are founded on the principal of this shared relationship. They offer ways that individuals and their families can participate in policy discussions and public officials can hear from them about their lives. These are excellent forums but understandably limited in the range of their influence. By and large, the broad policy and funding decisions are made by policy makers and professionals further removed from the day to day lives of people at the receiving end. Maybe that’s simply something we must accept as the nature of things but I believe the importance of informing both sides about who they each are and why they do what they do and need what they need is one of our most important advocacy goals. How often do we hear, privately of course, that those empowered to make the big decisions don’t understand the grassroots needs or that those at the grassroots level don’t understand the complexities of the issues well enough to offer meaningful input? We may like to say publicly that doesn’t happen but we all know it does. There has been a lot of progress getting the input of people with disabilities, their families and guardians into policy and funding decisions. There needs to be more. There has also been some progress made in getting people in decision making positions more familiar with the lives of those most affected by those decisions. That’s a harder challenge. Just as the grassroots people don’t have the time and base of knowledge to dive in to jargon and spreadsheets, those up to their eyeballs in such things haven’t the time to immerse themselves in daily life stories and meaningful site visits that aren’t simply photo ops. Whose system is it? Everybody’s. With billions of dollars involved and millions of people’s lives there is not anyone who is not affected by the big business of providing services and supports for people with developmental disabilities—from the citizen neighbor and taxpayer to the individual and their family waiting for services to become available to the policy aide in the governor’s office or legislature to the education specialist or private provider. We all have a part to play. It is important to remember that. It is also important to remember that an awareness of the importance of those other partners is a large part of helping this huge complex system accomplish at least some of what it should.

Like Math Class: UCP Report on State of the States

admin — Wed, 30 Apr 2014 18:38:56 +0000

Today we’re going to math class. I know. I hear the collective groan. But United Cerebral Palsy recently released a report on how states are doing in terms of some areas of money and numbers and while it may turn you off as deadly dull, these are the kinds of stats and trends that tell us where we are and where we may be going with services for people with developmental disabilities in our state. It is stuff we need to know, think about and act upon. https://caseforinclusion.org/data/state-scorecards As is often the case with reports of these kinds, there’s some good news and some bad. And I think both tell us some things that as advocates, we need to be aware of and question further. Right now I think what the bad news tells us outweighs the good. Briefly, it shows that the state has been drifting in its promotion of community living options and supports for people with developmental disabilities. It shows how that lack of focus is having its most serious effects on those living with their families; both those waiting for other residential options and those planning to stay with their families for the foreseeable future. Stay with me on this as it unfolds. First though, an update. After this was posted, in answer to my question about the steep drop in the numbers of families getting support, it was pointed out to me that drop might be due to the transfer of children with developmental disabilities to the Department of Children and Families. That makes sense. I would hope in the future when a reputable national disability organization like UCP asks for numbers that they and the state would allow for such administrative shifts, but that’s not my prupose here. Fair enough to say that those children and their families, 15,000 or so, are now recieving those supports outside of the ones they recieve through the educational system through DCF. Questions still linger about how those are shaping out but I’ll raise those later. Some of the trends highlighted by the UCP report are related to the state’s slow movement over the past 10 plus years in promoting community based and inclusive options for people. The hope is that the closure of North Jersey and Woodbridge developmental centers will help spark that along. But as these numbers confirm, and what we all knew, it has been sluggish at best. And, due to the long delays in getting those efforts back on track, many individuals and their families cannot wait for that lengthy process to infuse new energy into the system. First some high and low lights. New Jersey’s overall ranking in this report is 15^th. That’s not bad for the state that still had the highest per capita state institutional population. But it’s also not so great for a state regularly in the top two or three of per capita income. That institution population has crept down, dropping from about 3,000 in 2005 to 2,400 in 2012. If you add in the number of people served in other large congregate care facilities, like nursing homes and other ICF-DD facilities that are separate from the DCs, the population of those living in the most segregated settings actually has risen slightly over that period, to about 3,150. The number of people being served by the Home and Community Based Waiver has risen about 2,500. That’s a stagnant trend for a state that says it’s progressive. I can feel you all beginning to go glassy-eyed on me but try to hang in there. This may seem dull, like state and federal budgets, but it is the numbers that often drive the money, and it is the money that drives the agenda. So it is important to take time to talk about reports like this one and to follow the number crunching going on between the administration and Legislature this, and every, budget cycle. These kinds of casual snapshots can point out important trends and raise questions. This one focuses on how the large amounts of federal Medicaid monies are directed and that is a major driver of policy, and indicator of priorities. One thing this report says to me is that while we talk passionately about promoting more community based, inclusive and natural options for people with developmental disabilities we’re not actually doing that much to push that agenda along. Certainly the administration and the Department of Human Services get kudos for the proposal to close the two DCs. They deserve it. But it is a quietly slow and un-championed process, at least publicly, and I believe that while that may be politically prudent, it leaves an advocacy vacuum across the whole DD services arena. I think that political prudence may be at the root of the missing waiting list stats as well. The 2008 totals were significantly up from the two years before that, by nearly a thousand. If that trend continued over that next four years it would put the issue back front and center, as it should. But that would be uncomfortable publicly and politically. That’s too bad. There are times in social services when the needs of the people served or, in this case, in desperate need of services, must trump those public relations concerns. That trend is uncomfortable with good reason. It means that what we have been doing is not working and needs to be changed. It is why information about our social services efforts must be accurate and readily available. There are people’s lives hanging in the balance. There is volatility in per person costs for people in institutions and the overall trend had been up, predictably, with a dip and a spike over the past two years. Volatility is a sign of instability. That and the overall trend upward will continue and drag out if these populations are simply allowed to dwindle out by attrition over protracted periods of time. The home costs have risen more steadily, in line with societal costs and modest efforts to expand despite stagnant resources. Still, this trend is consistent with some of those above that show an overall policy of maintenance and stewardship rather than active progression. A final residential number of concern is the six percent drop from 2011 to 2012 in the ratio of community dollars spent to the number of people in need of support by those dollars. Not a huge percentage but this is after seven years of steady increase, including an 11 percent rise from 2010 to 2011. It bears watching. We have heard for many years how community providers have been struggling to make ends meet with increasing numbers of people to support and shrinking dollars to do it with. So any dip in that dollar to people equation can have serious, immediate effects. The UCP report notes a drop in the number of families receiving support but no one bothered to tell them, and I guess they didn’t ask, why that drop occured. As we said above, the drop, while certainly not statistically significant–most, if not all, of those children and their families now being served through another department–it does kind of accidentially raise some questions about how such a significant structural change might be affecting those children and their families. Families constituted a powerful partner in the DD structure in the past. Is that still the case? Are the DCF families part of that or do they have a similar structure set up? Does all that need to heppen? I believe the respected involvement of families during those robust years was a real asset to policy and funding development. It would be a shame to lose that, especially with the younger families. The way to build a responsive system of supports and services is consistently and over time. Younger families need to be a part of that ongoing discussion and, as we’ve seen historically, the promotion of that discussion needs to be built in to the bureaucratic structure somehow. We’ll be exploring these issues further in future posts and I would love to hear what some of you think about it. Finally, a hopeful note in the area of employment. Surprisingly, to me anyway, the number of people in supported and competitive employment jumped nine percent between 2009 and 2011. That bears looking at too, for more positive reasons. Whatever helped spark that rise should be vigorously promoted and if, like sometimes happens, no one knows why it went up, maybe we should find out.

Common Core – A Mistake Revisited

admin — Wed, 16 Apr 2014 18:37:27 +0000

There have been many attempts to standardize education since schooling for all children became mandatory in most Western countries. I have documented the experience I had as a child in England with the 11-plus exam (People & Families Magazine, Summer 2012). I took the 11-plus three times in the space of one year in a futile attempt to pass the standardized test. It was not until I was in my early 30’s, and completing my first graduate degree, that I realized I had a learning difference that included an inability to take tests. “No Child Left Behind” of the George W. Bush administration was an attempt to set into place regulations to assess how well teachers and students were teaching and learning. It was a response to the United States falling behind children in other industrialized societies in English and Math. What actually happened is that teachers began to adapt their teaching methods so that the students would learn how to take the test, so they would not lose their jobs. In fact, the curriculum was adapted to teach to test-taking. Most of the creativity in teaching was removed as teachers responded to the need to be accountable for what the students could regurgitate on a standardized test. We created a school-full of children who could take tests but learned very little about how to adapt their learning to the real world or to experience the joy of learning new facts, ideas and being involved in events outside the classroom.

The most recent iteration of this misconceived concept regarding test-taking being equivalent to learning is “Common Core.” I scoured the website that describes Common Core (www.corestandard.org) and found one page that describes the provisions made for children with disabilities. The page states, “These common standards provide an historic opportunity to improve access to rigorous academic content standards for students with disabilities.” Furthermore, “In order to participate with success in the general curriculum, students with disabilities, as appropriate, may be provided additional supports and services.”

The problem is, these “provisions” for children with disabilities are reserved for those who qualify for an Individualized Education Program (IEP) through the Individuals with Disabilities Education Act (IDEA.) Many children who have problems taking tests, including myself, do not qualify for the IDEA. The accommodations for children with disabilities do not apply to those who learn differently or who have test anxiety or other psychological reasons why standardized testing does not work for them. In my case the outcome of my not being able to take tests was that I was denied an education that would lead to an English university experience. For a child who is subjected to the Common Core curriculum it may mean intense anxiety and / or feelings of inferiority and failure. And, as I have proved, being able to take a standardized test has nothing to do with intelligence or aptitude.

To put it bluntly, standardized tests do not work for a huge number of children. Our education policy makers have to find another way to evaluate educational achievement levels that do not expect all children to do well on methods that require proficiency in rote learning. Why we cannot concentrate our teaching methods on a curriculum that stimulates learning and a love of learning is baffling. I agree finding the best teachers is essential. But the best teachers are not necessarily those who can successfully pour information and data into the minds of children so they can in turn pour it onto an exam page. Teachers should be given the tools and opportunity to find out what stimulates each child to learn. Pay them a decent wage; give them the supplies they need for the classroom; hire counselors and nurse’s aides to take care of non-academic issues; hire teacher’s aides to assist students who need some extra assistance; have a reasonable class size; provide funding for out of the classroom experiences. Then, periodically evaluate each child according to their learning style to see if they are retaining the information they are receiving. (In my case, if a teacher had sat down with me and asked me questions, or had me write an essay, about my educational knowledge they would have found out that I understood everything that was being taught, and had retained the information indefinitely.) If a teacher is not succeeding in teaching the students, hold them accountable.

We need to redirect our educational funds to stimulating learning and empowering our educational system to individualize learning. We have simply not learned that relying on standardized tests to evaluate educational achievement does not work for many children. Unfortunately, we will continue to allow many very bright and gifted children fall through the cracks if we continue to insist this is the only method we will use. Let’s individualize not standardize learning! Alison Lozano, PhD, MPA, MSW