Manual Guardian Transition Services, Inc. - Support for those on the spectrum, created by a man with Autism

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This is a facilitated discussion with older caregivers to examine:. Weymouth, through October 27, South Shore Support Services presents this skills groups for young men ages 16 — 23 with disabilities. An educational and experiential classes designed for men with disabilities to learn about healthy relationships, interpersonal skills, and human sexuality. Sessions Include:. Hingham Town Hall, October 10th, Marlene Sallo, Executive Director of the Disability Law Center, will speak about voting rights for individuals with special needs. All are welcome to come and register to vote.

More details to follow. South Shore Support Services, through December 5th, Must be able to give a commitment to attend the Leadership Series over a period of nine weeks. Learn how to successfully work the job fair with advice from two HR reps, one of whom attended the job fair in years past looking for a job.

McCormack Perkins. Hosted by the Milestones Program of Pathlight. For more information visit w ww. Peabody, September 5th, Worcester, September 15th, She is going to set the tone for this empowering self-advocacy conference. The board, the presenters, and many of the staff members are all individuals with disabilities.

Everyone has the same rights. Rights and responsibilities go together. Everyone should be treated equally. People should have the same opportunities to make their own decisions and choices. People should have the support they need. Everyone is important. We speak out for ourselves and each other.

We stand by each other and make things better in our lives. Easter Seals Worcester, September 24th, People with special needs can develop financial skills and learn to manage money so you can live more independently in the community. This includes how to balance a checkbook and how to manage your credit. Marlborough, September 19th, They provide ongoing training, professional support, and at times financial compensation to people who require assistance to their daily living activities like bathing, eating and dressing so they can continue to live at home.

Services also include nursing oversight and case management. Wayland, through August 26th, This group is for young adults, ages , who are on the spectrum, high functioning and motivated to improve their ability to make and keep friends. The first sessions work on skills understanding and development. Later sessions include developing relationships and fun ways to practice social skills, including eating dinner together, games, mini golf and a picnic.

It is not a Weaver Center therapeutic program. Note: Scheduled activities will be modified to meet the interests of the participants as much as possible. The program activities will become more specific for future programming. The AFTER Program offers various recreation and enrichment activities after school to promote social skills and the transition to adulthood. Meet new people, have fun and get a break from parents or caregivers. Arrangements must be made directly with the host, and are not staffed by The Arc.

Org x This will be a night of dancing, music, fun and food. Attendees are encourages to bring their friends, families and dancing shoes. Through this unique and comprehensive program, they encourage an environment of mutual respect for children with and without disabilities. Framingham, August 7th, She will share information about guardianship alternatives.

This Massachusetts Commission Against Discrimination workshop will cover the complain process. If you were treated differently or unfairly based on your identity as a member of a protected class, you may file a Complaint of Discrimination at the MCAD. The workshop topics will cover. Filing a Complaint. Respondents filing a Position Statement.

Concord, MA, August 16th, Prepare your child to start the school year with strategies that can improve their executive function skills. This class is open for students who will be entering high school this fall. An opportunity for your high school student to learn practical, innovative strategies that can improve executive functioning skills that are needed for homework, reading, writing, projects, and studying Students will learn how to develop :. Interactive activities will be incorporated while learning effective new executive function routines.

Exploring the Options: Post-Secondary Education for Individuals with ASD will cover how post-secondary education is becoming more available for a wider range of individuals on the autism spectrum. Hear about resources in Massachusetts, as well as considerations for transition and beyond. Speakers presenting will be from the following organizations:.

Bridgewater, MA, July 9th, Free but pre-registration is required by July 2nd, to attend. This is an ideal workshop if you have a child that is making a transition in the next school year or want to help your child succeed in transitioning to new environments. Lynn, July 18th, Family to Family — Familia mas Familia. Developmental Disability in the family? Brockton Area Arc, June 5th — 26th, Mandy knows how to tailor the curriculum for those with disabilities in an intellectually-appropriate way. Free and open to the public. Ever feel overwhelmed by all the information available for the loved one you care for?

Wish you had more time to enjoy life with less stress? Could you use some financial relief? Weston Public Library, June 6th, For families just entering the adult disability world, or a refresher for those already at that stage of life. Presenter Geoffrey Misilo, Esq. Hear about a range of adult disability issues including:. DLS is a program staffed by experienced Family Advocates and Clinical Case Managers who work to promote the lifelong well-being of individuals with disabilities and their families.

If you could have whatever mental health treatment you wanted, what would it be and why? Tell a story about a time your mental health treatment was good or bad. Register to share your story on a phone call with other young adults with disabilities and mental health conditions June 18, June Contact: yellbulab gmail.

Test picture p. Bentley University in Waltham, April 28th, Keynote Address by: Dennis E. McGuire, Ph. Challenger Baseball — Norwood. Baseball Fun for children with a wide range of abilities.

AuSM: Autism Society of Minneosta

The Norwood Area Challenger Baseball league welcomes children with disabilities aged 7 and up from all over the region. No experience necessary, no limitation too great. Children with intellectual, physical, emotional and behavioral challenges can all enjoy being part of a team in this relaxed, supportive environment. Coaching is provided by parents and volunteers, who are welcome volunteers to assist the children on the field. Challenger will also be participating in some regional tournaments.

Norwood Challenger is a division of Norwood Little League. Little League fees are required, but Challenger players do pay significantly less than the standard fee. The fee covers insurance for all players, field maintenance, uniforms etc. All players receive a shirt and a hat. Players must provide their own glove. Bats and batting helmets are provided. For more information contact NorwoodChallengerSports gmail. Needham High School, February 3rd, She will focus on helping students prepare for the college search process by attending a workshop that explores the issues facing students with learning disabilities:.

Topics will include a discussion of junior year, some of the key assignments, the real and perceived stress, and how students mature and manage throughout. Miranda Courant-Morgan, M. With post-secondary planning always on the horizon, the presentation and question and answer session will focus on how to coach your son or daughter through these formative and boundary testing years to meet with success.

Danvers, January 9th — 23rd, The workshop series will utilize the Spotlight Model including discussion, improv acting and media to develop and hone skills. The group will cover barriers that previously blocked making in person connections, and the logistics of finding your tribe. Now what? The group will cover how to exchange numbers to continue connecting with the people from the event. Charles River Center in Natick, January 9th, Caregivers can be relatives, friends and non-related people with the exception of a spouse or a parent who is the guardian.

Caregivers are paid a tax-free daily stipend for the services they provide such as assistance with activities of daily living, personal care, meal preparation and transportation to appointments. The program is funded through MassHealth.

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Framingham, February 8th, A team of case managers and nurses partners with families to help them care for their loved one in the comfort of their own home. Individuals gain greater independence and opportunities for an active lifestyle in the community, yet have the support and companionship of someone who cares for them at home. The series focuses on transition, employment, housing, friendships and other topics that will lead to interdependent, full lives.

Presented by Youth Move Massachusetts. Watertown, January 13th, This College Success Perkins Open House will explain how the program is a 9-month residential program to help students with visual impairment get the most out of college. Burlington, MA, February 14th, Join Maximo Pimentel, a self-advocate working with Massachusetts Advocates for Children, as he presents on self-determination, self-advocacy, and increasing active student participation at IEP meetings.

Raising a child with an autism spectrum disorder

Students are encouraged to attend with their family. Applications accepted now through February 15th, The American Council of the Blind has an opportunity for students who are legally blind to earn a scholarship, whether you are going to a technical college, an entering freshman, undergraduate or a graduate student. Central time. Weston, January 26th, The speaker, Elise Wulff, experience working with individuals on the autism spectrum, their families, and professionals, in both public and private settings. The curriculum teaches students to develop a healthy understanding of their unique profiles as learners and to become engaged with their communities.

Baz Fondamantal nan Planifikasyon e Tranzisyon. An overview of the transition planning process 3. Renald Raphael or Weymouth, through February 26th, Westerman, certified as sexuality educators from the Massachusetts Department of Developmental Services and Planned Parenthood of Massachusetts. Hear about the steps of applying to college with a disability and accessing supports once on a college campus. Brockton, February 27th, This is your opportunity to learn about national and state initiatives that promote evidence-based transition practices and positive post-school outcomes.

Presenter: Maria Paiewonsky, Ed. D, is the program manager and transition specialist at the Institute for Community Inclusion. She also serves as Director of the Mass. Chelmsford, February 28th, Free and open to any parent. Jonathan Smith, from the Federation for Children with Special Needs will be providing an overview of the transition planning process for youth with disabilities ages on IEPs.

University training in Applied Behavior Analysis. The speaker will be Susan B. Woods M. Ed from Northeastern University in Rehabilitation Administration. Westwood High School, March 7th, For more information , please email info masilc. Members include persons who are knowledgeable about centers for independent living and the services they provide. The Council was established by Executive Order No. Weld, Governor of the Commonwealth of Massachusetts on September 26, The Council includes representation of individuals with a range of physical and mental disabilities from the various geographic areas within the Commonwealth of Massachusetts.

Tyngsboro, November 8th, This seminar will explain why teen and parent relationships can become strained and even volatile. Teen social relationships are complex and this workshop explores those complexities, so that parents are better equipped to help their teen through these challenging years.

Parents will receive tips on how to remain connected t o their teen and how to frame up the social difficulties that their teens will likely encounter. Marlborough, October 31st, This is an Employer Only Event. Technology and Innovation inherent in Universal design is transforming lives in workplaces for everyone including persons with disabilities. Learn about and experience the technology and innovation through speakers and a variety of exhibits including an adapted van used in teaching individuals with disabilities to drive; medical and technical devices, and robotics that are transforming workplaces for everyone.

Peter is also a passionate advocate for people with disabilities and has spent much of his career working with accessible technologies. Joanne Nicholson, Ph. Holyoke, November 2nd, For parents and professionals working with teens who are approaching or in the transition process with IEP or Supports.

This is the workshop that teaches parents and professionals to develop on going appropriate goals and objectives during high school to meet the goals of that student at graduation or when they turn We will help you determine your goals for 18, 22 or beyond and assist you in making a plan of action to meet them.

Burlington, November 8th, RSVPS are required t o o.

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Westborough, November 8th, Fetal Alcohol Spectrum Disorders FASD represents a spectrum of disorders that describe the range of effects that can occur in an individual whose mother consumed alcohol during pregnancy. These effects may include physical, mental, behavioral, or learning disabilities with possible lifelong implications. These disorders often co-occur with substance use and mental health disorders, and generally require treatment modifications for successful outcomes.

However, there are limited resources to assist youth as they leave high school and enter adulthood. Therefore, a comprehensive needs assessment and prioritization of efficient and effective supports is needed. It is imperative that transportation be included in this discussion. Transportation for all people in varying degrees on the spectrum.

Not only in terms of attending programs and for daily living but consideration of placing housing in rural communities and the access for public transit. Not only is this important for those with higher functioning ability who can take or be travel trained to use public transit but for those who must use a service like an ADA paratransit service which has limited service areas. If housing is placed outside the service area, it cannot be served by this mode of public transit for example. In trying to enhance the lives of people with disabilities, if they cant get there As our son is turning 18 years of age, we are finding that the research for this age group of individuals on the AS is almost nonexistent!

Research on the effectiveness of ongoing Behavioral intervention, social skills learning, vocational training, housing, safety and supervision needs, community programs, and longitudinal studies that further define AS over the adult lifespan are all needed. My son is 50 very limited speech works at a real job and contributes towards payment for his full time job coach.

I think he would benefit with ABA but I can not find any one who is interested in providing this to an adult. If I do find it I would appreciate it if it was covered by medicare. Services must care foe our adult children who have been damaged by vaccines. These programs are not available in all states.

They should be. Parents shouldn't have ever to worry what will happen to their adult children if one or both parents were to die. Adult services. Children reach 21 and they are all but abandoned by the system. Provides for services after a child turns Children and families are left stranded in many cases. Although an item on the IEP, transition services are not taken seriously. Adult services should be high quality and similar to school aged servicesnot babysitting.

How do we ensure that services and supports are reaching those in greatest need? Lack of resources and access across the board on these. Programs need to be put into place to support adults with autism beyond their 20s. Caregivers need help as well as parents need a plan for caring for their children with ASD once they have passed.

More and more services for young and not-so-young adults are needed. There are not enough supports in place to help these individuals navigate the world after the cliff of They need ongoing supports and services. Autistic elderly adults are out there who need services now, not just the future, and have been here all along in societies. This is not a new disorder. Improved screening could also help research current successes autistic elderly are having, as well as problems.

This will also help the future of the current generation of autistic young people, who were identified early. Again, social scientists familiar with researching other minority cultures within our own, might be very helpful here. Many older autistic people would likely love help others to suffer less than they have; why not recruit more to help in such research, design of community centers or activities in regular community centers, and so on.

Adult services are lacking for the large number of individuals with autism entering adulthood. Services for adults aging out of the public school system. With so many children affected by autism, we're going to soon be a society filled with adults dealing with autism and more education and resources are needed to help them live productive lives and contribute to society.

I am most concerned about having a one-on-one assistant to accompany my son when he is out in the community after he turns age 21 and support is no longer available under the IDEA. Lack of services for adults with Autism, particularly adults that are deemed "high functioning" or need different supports than have been traditionally offered to older DD populations. Service, access, and utilization of service systems for recently over 21 and also for elderly late diagnosed.

Most important to provide affordable diagnosis for elderly who need autism diagnosis to access appropriate services. More support and resources to help undiagnosed adults get identified, helped, recognized or diagnosed? Useful for autistic people, but also for other mental illnesses. Current social stigma of mental illness, typically means people only get diagnosed after extreme suffering and failure in their lives.

Many people are likely suffering directly due to their mental illness, limitations and disabilities, but are being shamed by society and blaming themselves. Jim N, Parent of a fomer toddler diagnosed with autism. The ASD diagnosis must be certain, given we are in the age of medical records that can get hacked. An ASD diagnosis would make it difficult for an adult to get employed or compromises their privacy. There must be screening to ensure people are diagnosed with good cause.

And the screening should thoroughly review the borderline ASD person. Working in adult services is a broken system. Too many players, too much bureaucracy, YOU have to know what they Should know so you can get what you need for your child. OVR is a disgrace. Paper pushing. We need better support services for individuals to be able to be employed, sustain jobs, and live where THEY want to live. Freedom of choice. We are stuck, and then we get beat up physically by the adult child because of behaviors due to poor sleep, if any. There is no financial planning when one has to rely on SSI and parent care provider pay to live on.

Research that. This is a problem as the autistic population has exploded in the past 20 years.

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Word of mouth is how it is currently done. My MSC learns more from me than I do from him. Focus on services for the parents that have to work and figure out who will care for their child. There are no special needs day care so unless you can afford a private service it's nearly impossible to work unless one parent works days and the other works nights. You can't just leave these kids with folks that don't understand the condition. There needs to be more help available to parents so they can continue to be productive working members of society.

In general there is a lack of research and public understanding about adults on the spectrum. Many resources and therapies are geared for kids as opposed to teens, young adults, and older adults. I can't speak first hand about the needs of this age group, but the fact that I don't know much about what possible resources and hope there is for my child when he gets older speaks volumes - there's a dearth of information if I, as someone within the autism community, has little knowledge, let alone those outside of the autism community.

I wish I had a more positive answer for this question. My son is 12 and it has gotten harder and harder to get any kind of help. I worry as he gets older he will not fit in the neurotypical mold for jobs and housing and will not thrive. This is a problem as not all parents have the ability to care for their autistic children through adulthood as elderly aging happens etc.

Then who does it fall to. Having colleges that are autistic friendly, dorms that are for autism and Community programs will help but programs catering towards helping parents prepare for adulthood would help too. How do we do all of this and get through puberty and the social rigor that happens at grade 6 and up. That's the big question. How do we teach about daily living skills and not feel we are sending our children out to the "wolves" to be taken advantage of? My biggest fear is my son will be taken advantage of and no one will be there to help. Autistics who require life-long support are split into haves and have nots.

The "haves" are under state waiver programs where they get funding to try and attain a reasonable quality of life. The "have nots" are those who are unfortunate enough to have uneducated parents, uninformed parents, parents who had to move out of state for a job, or parents who are uncaring.

In any of these cases, no one would have put the autistic individual onto the state waiting list for funds. So, through no fault of their own, the autistic person is relegated to long days of lying in bed or sitting in front of a TV, or pacing aroung a room, because they have no funds available to them for ANY activities. SSI provides shelter and sustanance. Beyond that, they just exist. Ending this unfair and deplorable situation should be the top priority for our country.

You need to add respite care for parents to one of these lovely lists you are compiling. However, my answer to question 5 applies here. Beautiful wishful thinking on your part, but my son will have those things only if I do the research and put something in place for him myself. There is no help for us in Central Illinois. Marsha Salome, Parent to 15yo son diagnosed with autism at 3. I NEED this info. What I seek are the following: information and laws about when to transition from constant monitoring to independent living; plenary guardianship; information on housing; wait list info; what happens with SSI benefits; how does obtaining employment, if applicable, change benefits and affect SSI; life insurance possibilities because it can be near impossible to obtain.

Listen to autistic adults, because we are the best resource. Unless you actually listen to autistic adults, NADA. Call me. I am ill, my kid probably gave me another concussion and I have no energy to write it all out. Only recently is there any focus on adult life. Just like in school, there needs to be a range of options, from sheltered living to coaches in the professional world. There are a lot of doctors, lawyers, accountants, and college professors who are on the spectrum who could use help in other areas. As an Autistic navigating the transition to adulthood, California's Regional Center system and Lifesteps, which is a program the Regional Center hooked me up with, have been very helpful.

Cognitive issues make things like finding a doctor and applying for aid very difficult, and having a support person has been immensely helpful. I am trying to major in child development with the goal of becoming a special education teacher to help others like me, but being successful in school has been a struggle. I am fortunate enough to have a minimum wage job, but even that is difficult because of interaction with the public. There is virtually no higher education support out there, for learning necessary skills like time management and study skills, and college professors can be not very understanding of different ways of learning.

Early and school aged ASD interventions through inclusionary practices, mental health services and proper ASD educational identification should be top priority. Training for school staff, law enforcement, businesses and universities on "What is ASD? Advocacy training for individuals with ASD. Many autistic people grow up and lead fairly normal lives but again, they are typically left out of the conversation on how autism affects people, left without any support or services, and they are often invisible to most of the world even though there is a large number of them out there.

As this population exploded, we began to provide different services when they were being educated and now this population is growing up and becoming adult and we don't have a plan to acclimate them into the community successfully. I would like to see best practices developed to minimize discrimination against people on the autism spectrum in job applications and interviews, in job performance evaluations, and when evaluating disciplinary complaints in the workplace.

Goals include preventing qualified applicants from being rejected, preventing undeserved poor job performance evaluations, and preventing undeserved disciplinary rulings for people on the spectrum. Social abilities that are difficult for many people on the spectrum should not count against a person unless those abilities are central to the job position such as public relations. Discipline cases relating to job performance or conflict with other employees should include consideration of accommodations that may resolve the issue.

Community integration, including in employment and housing. The future holds a beautiful autistic community of confident and accepting autistic adults. That's the thing to find and get. That's the thing that growing it could help improve services so that they actually help autistic people instead of conditioning or tranquilizing us. As we move toward increased community involvement and integration there needs to be a governing body to insure private providers are offering safe and high quality services. Again, educating the PUBLIC would help greatly when it comes to transitioning to adult services, vocational training, employment, and financial planning.

With the situation being what it is at the moment. It does not look very promising. General education and knowledge is nil. The judgements of people and assumptions remain the same the future looks dark. It would be really awesome if people stopped thinking of autism as a problem and started working to accept us. So what if your kid flails their arms sometimes? Why should that be unacceptable behavior? Efforts should be made to educate the public, and especially potential employers, about what autistic behavior looks like and what it means, about the fact that it's not bad or scary, and that's it's not rude or unacceptable, it's just the way the person's brain works.

It is important to promote awareness of autism in adults as provide opportunities for services for adults with autism spectrum disorders. The gap in services to allow community inclusion is devastating for my family and others and must be addressed. Community integration planning should start early. Focus on autistic people of color. Given the prevalence of autism, it seems that two things could help: 1 ensuring school systems can create learning environments that support unconventional learning methods; and 2 educating employers to ensure they understand the influx of employees entering the marketplace may have different needs but still can be successful members of society.

The inclusion of autistic people in the mainstream -- acceptance and tolerance instead of so much emphasis on diagnosis and treatment. Dyan Spruill M. ASD quirks can be misconstrued as malicious or inappropriate. I just want to say yes to all of the above. Adults on the spectrum are gravely underserved and with some support and guidance most can become contributing members to society.

All the aspects of this area must be a priority in the years to come. Again all are important and what is most important in regards to services is combining services to an individual need. All of the above. All people with a disability need more support around finding a job.

Employment agencies need more training on helping find and get jobs for people with disabilities and also help them with vocational training, community colleges etc. Need to have some open conversations with big business to see how we could encourage their hiring of people with disabilities.

And do a marketing campaign for awareness. Much like have done for Veterans. Current research, services and policies in these areas are all inadequate. I'm concerned about the future for Autistic adults. I tutor children with varying severities of Autism, and most are facing a future living with their parents until the parents of at an age where they can no longer care for the person with ASD. Then the person with ASD is left to the care of other family members or the state, often with sad outcomes. We are failing an entire demographic of people. At least for persons on the severe end of the spectrum.

Kids with autism are "cute". But we are "adults" for MUCH longer than we are children. This country is not in the least prepared for the upcoming influx of severely affected individuals with autism when their parents are no longer able to care for them. There's insufficient housing options available and that's a vast understatement. The despairing lack of housing options for severely affected autistic teens and adults, especially as both parent and child age, is glaring. And, with no safe place for their child to go after they die, I foresee that their desperation may lead them to choose murder-suicide as opposed to leaving their beloved child behind to an unknown fate.

This country is not at all prepared for the upcoming influx of severely affected individuals with autism when their parents are no longer able to care for them. There's vastly insufficient assisted-living and housing options, especially for the most severely affected. They have nothing to do after high school ends, leaving their parents unable to work because they have to care for their child. Modifications, modifications, and modifications. In all areas. All concerns listed above for research!!

Okay here we go with this notiion any of above topics are available to our childern there are no services nothing at all ever get it you all are stealing our children's lives hopes and dreams while you sit and chat and workshop and chat some and workshop and build resources so you all feel better STOP and provide topics metioned first and foremost and then you all can have at it and leftovers like you dish out to our chidren please come and stay with me just one night or weekend and you listen to phone calls to agencies providers you call every I mean every single resource that you pretend helps me and you might get the pain and sickness my husband and I feel daily not just for my twins but my daughter who is affected for the rest of her life by your misuse misunderstanding of our lives.

Having pre teens, this is on my mind. I have not researched yet. Having a goal at a young age and giving hope for a future is important. I have so many doubts and do not know how my children will live as an adult when they can't work. I do not have the resources or income or knowledge to deal with any of these issues.

Wow we haven't got this far- he is 5. Please work on this- it scares me looking at it. All of those topics are important for the future of adults whom have Autism. To provide hope and positive outlook for adults with Autism, focus on therapy st, ot, aba, social skills , education, work, financial planning, and housing. Autism organizations and resources need more funding. As well as more awareness, connection, and acceptance. This should be a top priority area for research, provision of services and institution building. We have increasing numbers of adults with autism and no roadmap for them at all.

Vocational training, employment and housing are particularly important. Help everything! We are all concerned what is going to happen as we age to our children. We have a major crisis brewing. The number of new cases is staggering. This issue is so important, the numbers of Autistic individuals who are becoming adults is staggering, and once they turn 21, services fall to almost Zero.

Housing, Jobs, Community Support, all have to happen! Quality of life at all ages is very important. Transition into adulthood is difficult for the child and parents. More services should be available. So I personally think these topics might need to take a back seat compared to some of the others. All of these! Far more than 'finding a cure. If done correctly and not cookie cutting the treatment options, the future looks bright for many on the spectrum since the spectrum is so vast these days.

All the topics listed are of huge importance to those of us with children who will soon become adults dependent on the care of others. All of these are very important. I cannot pick one but believe more funding in this area overall, to effectively address each component, is critical. All the suggested topics are relevant. We have ignored adults because the parent voices have been the loudest. Autistics should not be warehoused or dismissed as useless eaters. This absolutely has to be the 1 priority. Absolute, top priority, no question.

All of the above need equal priority. What happens when no more school, nowhere to work, no where to live, no transportation, no further education, no more interaction with people, no recreation. These matter most especially for non speaking and id individuals with autism. They have a lot to offer such as attention to detail , task oriented and compliance. Good people deserve a good life. The most important gap in services - all over the country - is the lack of housing for autistic adults.

The need will quickly become more acute as the one in 68 children now afflicted with autism mature into adulthood. This unmet need makes parents of autistic children parents who cannot afford to die. For a loving parent, there is no worse pain. I was recently told by my son's medicaid service coordinator that the only way we could get him housing is for him to be deemed "homeless". In NY state there is a grading system 1. So unless we give up our son to the state we will not be able to get him a residential placement when we need it - for instance in case we died in a car accident since we've already found someone to accept his care if needed in such a case.

This is clearly ridiculous thinking but apparently there are so few residential sites that it is the only choice. My son is 19 and there really isn't anything that he will be able to do after 21 - he's more severly impaired than most and the choices are so limited. This area needs to be explored for the more severly impacted ASD adults. Again, much of what is available, and directing policy and state practice provides a clear directive to support maximum independence in an environment where necessary legal and operational frameworks and current funding levels will push vulnerable persons into unstable and underfunding housing arrangements.

This is likely to produce an intolerable level of trans-instutionalization to correctional settings, the most expensive and most traumatizing of all possible outcomes for adults with autism. The HCBS Settings regulations are overly restrictive in terms of specifying acceptable residential settings that may be supported by Medicaid funding. While I appreciate the aspiration of optimizing independence for each eligible person who seeks that, the actual models for achieving fiscal and operational stability for residents and the programs that support them have not been worked out.

Many in the population to be served do not demonstrate skills upon which independence relies, and the regulations show little to no recognition of the lack of legal and other institutional models to support greater independence by folks with significant cognitive and communication impairments. Families are still worrying about getting basics covered like housing, safety in relating to emergency personnel, and obtaining any service support at all after public schooling ends.

Education- Adults with developmental disabilities have much learning they can continue to do with structured supports like educational day programs. The most important priority is to provide additional funding to build more group homes. Housing is poor and the caregivers generally are people that are most likely unemployable but get jobs with the private companies that have subcontracts with the states. More money should be provided and more monitoring should be done by the states if they are going to subcontract out their responsibilities. I am very very concerned about where my non verbal son will live.

We are old ish I had him at 42 and now he is 13 and I am I am a young 56 but every day I worry about what will happen with him and I cringe to think that he could be abused maybe one day by a caregiver in some government set up home by lowly paid workers who are not happy about their job or their lot in life with having to take care of people like our son. We know all of his behaviors but we have grown up with them and dealt with them and love him regardless. He might not be so lucky one day to have someone who cares for him regardless one day.

His behaviors can be very difficult and he is non verbal so he couldn't tell someone how he was being mistreated. Also he needs somewhere productive to go every single day so there should be some awesome business owners who have the type of company who could manage these people and their behaviors and still have a successful company that can give these people meaning in life and some money to survive and friends and people to see every day.

Housing options for adults with autism. We need more, and better staffed adult residential options. Our children will someday be grown and we will someday be gone. We need to know there are possibilities for our children, that will keep them safe and give them a decent life. Individuals that were traditional served by this funding Down syndrome, Williams syndrome, Celebral Palsy, Stroke victims, etc. There is a huge gap in specialized housing, schools that teach life skills etc for adults on the spectrum. A plan to address this gap needs to be made and implemented. Survey adults with autism. How many are there?

Are there less than children with Autism? Why is that? What are their needs? Are there homes where they can be cared for and work programs to help them give back to community? Fund Day programs so families can work themselves instead of having to drop out of the labor market to care for their families as there is no where to take them for care. So the Federal government loses 2 individuals who can not work.

Then if families are having to care for their families without federal funding give them a tax credit, families are crippled with the cost of caring for disabled family members. Aging Issue: Current group homes for adult autistic are not equipped to handle age related problems. The organization that cares for an individual while he is healthy, or has temporary medical problems, is not equipped to deal with care requiring physical assistance, nursing, and treatment other than dispensing pills.

However that organization knows the participant best after years of experience with him, especially if the person is non-verbal. So that organization should have the continuing care responsibility. That requires that current group home residential programs add an adjunct nursing and medical care facility so the present care organization can continue oversight.

4 Paws For Ability

The autism housing crisis is growing more acute each day. Here in California we are losing, and not growing, placements even as the adult autism population is exploding. What will happen when parents become infirm or die? There is no plan whatsoever. Housing that an ASD adult on SSI can afford is nonexistent, and the support services are unreliable owing to chronic underfunding and such low wages that finding staff has become nearly impossible.

Further complicating matters, new HCBS rules threaten to impose draconian and discriminatory restrictions on the environments in which ASD adults can reside and still received necessary support services. In our area, there are not very many choices for adults that need limited support but can't live totally independently.

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Often times they end up in a group home that does not specialize in autism, so they really don't get the support they need or the opportunity to become more independent and self-determined. Julie, Mother of 4 year old newly-diagnosed with autism. With such a young child and a new diagnosis, this is the area that is the scariest and the most daunting.

There seem to be many services albeit expensive and delayed to help children to address different presentations related to their autism. But the issue that has woken me up at night several times per week since my daughter's diagnosis is this - "What happens to her when we go?

IMO, this is the most important topic right now in autism. That huge flux in autism diagnoses years ago will soon be young adults aging out of the school system, or "falling off the cliff" for those with significant needs. Many families are willing and happily come to terms with providing lifelong care for those affected by autism but they need more help with the costs associated with making an appropriate living situation i.

In the long term, it is far cheaper for the family to provide care with financial assistance than to have the individual placed in a group home. A financial framework that makes this possible is a priority. Transition of care from aging parents to sibling.

The greatest fear of parents is what will happen to my disabled child following my death. Many people with autism need life long care. How will this happen? Note a promising treatment is neuroplasticity that can help many people with brain dysfunction heal the issues that affect their functioning.

It would be fabulous if the Arrowsmith Program were instituted throughout the public school system so as to help the learning disabled to no longer be learning disabled. Financial planning is big, because even people living below the poverty line don't realize they can squirrel away a little bit each month to plan ahead for their child if given the right information.

There should not be a cap on what an adult with ASD can earn. For every penny earned, pennies are taken away from SSI. There is currently no good system in place to help my son when I die. He doesn't have the executive functioning skills -- something else that should be researched -- to manage on his own. While my son may be able to hold down a part-time job, do his laundry and cook for himself, I wonder what will happen if the toilet backs up. I wonder who will help him decide that his work pants and work shoes need to be replaced. I wonder who will help him understand everything his doctor is telling him.

When he's fifty and has his first colonoscopy, who is going to be there to both explain it to him, help him follow the prep protocol, and bring him home after the procedure? Who is going to monitor whether or not he is flossing his teeth on a regular basis? Who is going to step in if someone steals from him. Who is going to help him continue to connect with his extended family members? Who is going to help him if he does something that gets him into legal trouble? We need some type of system in place that truly cares for people.

We need to continue services for individuals with autism after they exit secondary school. They continue to need social skills training, job training, and functional skills training. The low percentage of adults with autism who work is a national disgrace. We need to worry most about overall infrastructure and how to meet the life-long needs of individuals with autism. And this needs to be done in a way that fully integrates them into the community -- jobs, recreation, friends, volunteerism, etc. Parents of autistic kids walk a fine line of seeing their kids become "almost independent. For example, a caretaker illness means "routine disruption" to an autistic child or adult.

Who makes sure meals, meds, laundry, transportation, and other life needs are met? Society is planning for aging, but Aspy needs are often unknown until their are problems. Similar to other mental health populations, they seem independent until the caretaker is unavailable. Needs are often discovered after there is a problem or tragedy. Agencies need to be prepared to step in and take over. Aspy's may be unwilling to pay for services, as they won't understand the actual need or be able to deal with this on their own.

Parents don't know what to do to plan for futures as we worry about our own medical bills. Today we are living longer and longer, we need to address the situation of individuals with autism spectrum that services needs provided and to be tax-deductible in a tax-free savings accountsuch such as the ABLE act. Services get more expensive as the years go on. My son is 35 years old. We expect he will be on the Medicaid Waitlist at least another five years.

His parents are aging and have health problems. We don't know where he will live when he can no longer live with us. We don't know who will be sure he goes to the dentist, his medications are refilled, clothes and shoes are bought, food is prepared, the bills are paid and daily chores are done when we are gone. Even more worrisome, we don't know who will do the paper work required by Social Security and Medicaid to maintain his benefits. When the time comes, we don't even know if we will be able to find care givers to take over from us, who are willing to work for the wages set by Medicaid.

We can't move to the retirement home we chose long ago because that would take us to another state, where we would have to begin the long process all over again, since Medicaid Waivers are state run. Help finding an appropriate job and job coaching, housing and support for daily living and someone to take over legal, financial and oversight matters from the parents are vitally important.

Which is more important changes over time. In the end, when the parents are gone, or incapable, someone needs to be a manager to employ caregivers and attendants, oversee health care and manage financial and legal issues, including benefits. That's the big worry. Who is going to care about my child and ensure things are done in his best interests. Parents are not planning in realistic ways for the soon to be adult children with ASD. More coaching for parents on how to support independence for people with ASD.

Long term cost of treatment or lack there of and the effects on the community and individual needs to be looked at and addressed. I am concerned for my son and what will happen to him when I am gone. Currently there are no decent resources for him. Where will he go? He is brilliant ut no school will take him due to serious anxiety. As a stakeholder, I have seen gaps ' in long term planning for an aging ASD population.

These are tough questions. I do not think research into these areas are likely to bring great gains. One really needs local involvement, funding for programs, and common sense solutions - not research. Having services early and support throughout the educational process helps a lot.

Without structure in place for providing those behavioral support services, kids are left to fend for themselves and often in the case of women fail to achieve what they are capable of accomplishing. Rock stars like Dr. Grandin got where they did by having the support of parents who knew they had to go the extra mile. Kids like mine who "pass" for NT, like I have my whole life, might not be so lucky if they become stuck in a system of round holes.

All of the above services are necessary for survival and most of them are NOT taught in traditional schools where emphasis is generally on passing the test and not serving the child. These issues span more than just special needs kids. My child is 5 and thinking about him being an adult now is scary! I feel that unless we really start getting a lot more funding and programs in place now for the younger people the future for adults on the spectrum is not good! Early intervention is supposed to be the key for reducing costs of future care, how can this be achieved with the funding available currently??

If we can effectively support and educate students, beginning at very early ages, they have the best chance to be productive adults, participating in and contributing to our society. We could reduce the need for services for students when they enter the marketplace if we would invest on the front end and provide the supports needed to enable those teaching students to understand what to do to enable students to be independently successful. AT this time I focus on youth transitions from birth to pre-ed to elementary and the transitions into middle school then into high school.

There is already so much focus for the transitions into secondary learning and work force but not much for the younger age transitions. When a child is diagnosed with ASD at a young age, we need to do all we can, aggressively, so that we can help improve their quality of life when they reach adulthood. Most of my work is with parents of young children, however as "recent studies have revealed the tremendous service needs within the community, with data showing that young adults transitioning out of the educational system frequently lose their services access and often have limited opportunities for employment and independent housing.

All of these young children will be young adults in the near future. And if we address their needs as young children appropriately, many will be able to live independently with supportive services. These are all huge problems. But they can go away if we can get to effective treatments. Then we would have the relatively simple issue of training and assimilating our loved ones into society and training them for whatever they show the greatest aptitude in.

That would be FUN compared to spending years training or attempting to train them how to tie their shoes, how to eat properly, personal hygiene, etc. All of these need a lot more emphasis. Let's not waste time looking for a cure for autism. Let's put supports in place that will enable them to live as adults, to work, pay rent, enjoy life.

Please focus on these areas more! Healthy and quality of life is the most important research, service and policy issues. There is one study that can tell us this data and that is the unequivocal comparison of vaccinated versus unvaccinated populations. Analyze subsets of data including but not limited to risk of: autism, cancer, diabetes, food allergies, life expectancy, prescription drug use, alcoholism, mental disorders, etc. I'd like to see more research on how to prevent autistics from being abused, especially by caregivers. I fear for my child and what will happen to him when I'm no longer there to care for him.

Will he be able to survive? Who will be there to make sure he's safe? He'll never be able to live on his own and eventually he'll outlive both his parents. How can we be assured that he'll be able to manage in a world without us? Who'll pay for it? Will he be abused or taken advantage of? These are the nightmares ever parent of a child with autism lives with on a daily basis and it's a horror none of us should ever have to worry about.

Whether or not autistic persons should get married and have children. True autistic adults are limited and their attention to growth, active lifestyles and quality of care suffers thusly. Health and quality of life across the life span. This is a growing area but we will need more services to educate and support relationships of adults with aspergers. So many marry and divorce. We need to help teach the adults with aspergers things they can do before they enter into marriages as well as educate their potential partners.

My concern is the differences bw autism and aspergers. The aspergers community needs help for the caregivers and spouses of adults with aspergers. These adults didn't get the help and support that children have these days. Most marriages to adults with aspergers ends in divorce. There needs to be support in place for spouses and anyone in relationships with these adults. They have learned coping skills for years that are hurting their intimate relationships.

Health and quality of life across the lifespan. I worry most about my son's life as an adult. All I want to know is that he can lead a safe, happy life, with a job he loves, and someone with whom to share everything. His behavioral and sensory issues also impact him on a daily basis. It does not matter how well educated he may become, if he can't handle the world, with it's responsibilities and constant change.

Prevention of illness by eliminating unsafe vaccines. Quality of life issue is very important, as is research on how adults with ASD react to the passing of their parents and family members, and how they can be helped. Also helping all affected to find their skills and talents to be a utilized and understood asset to the community. Health and quality of life.

Giving all people with ASD a chance to thrive. People with ASD being caught up in the criminal justice system. Outcome reports on quality of life for individuals not in group home settings would be a helpful guide. While BCBA is a service that is provided it will not be assessable due to the rate in which Medicaid pays. Also BABA's need to be able to direct treats since behavior is the key problem in individuals with autism.

OT PT Speech can direct treat. Community inclusion for those with the highest need without the BCBA support will put all individuals at risk. Group home scattered within communities without the proper support are a disaster waiting to happen as we just witnessed in Miami. The setting rule limits the ability to have proper supports in place to support individuals that have the highest behavior needs. Having coordinated medical care is important key, including dental. Sedation, is required for most ndividual with high behavioral needs and maximizing all necessary medical and dental procedures in one place.

Autistic individuals need their internal immediate families especially those that do interact well. Every parent of a freshman high school student should be made aware of their state's Vocational Rehab program. This should be required at the first high school IEP Meeting. Self advocacy goals should be well thought out and implemented. I was able to find help for my child in school but not during the summer or now that he is turning There are no job services or behavioral heath services now that he is Unless these kids have very proactive parents there is no life for these kids.

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No one cares about them and their lives could be enhanced so easily. Kids fall off the ledge after public education Vocational training and job programs would also be helpful. Many ASD adults can do meaningful work. All of us parents will die and then the community will have to care for our kids Transition and aging into adulthood. I was lucky, I was forced to assimilate and managed to barely and at great cost to my health but for those who can't easily, we need something to help them ease from high school to "the world" successfully, lest they remain forever in their parent's care until the parents are lost.

I've heard that once a kid turns 21, they literally fall off the support cliff. There are no good services to serve the adults and it's hard for parents to figure out what to do when they get older and can't take care of their adult child. My son is only 11 so I cant speak about the future just yet That being said, what is available when my son turns Its very scary as a parent. There needs to be more better programs that help parents figure out what is available for there children. Many more programs are needed as in the next 10 years there are going to be so many special needs adults hitting the system.

Lots of ideas that would not cost that much money, but who do i tell them too??? For individuals living with autism, they have goals and aspirations like everyone else. These need to be accessible to them, and not something that is only handled at IEP meetings when parents voices' are most heard. School districts need to invest more time and resources into supporting transitioning young adults, from planing and preparation to jobs, college etc.

A better job is needed. Unless we really start working with this population, we are going to have a lot of adults unable to work or fit into society. Adult services, community training, vocational training, employment all of these must, must be Improved greatly. Students fall through the cracks and end up sitting home after high school. I think high schools need to have better programs to meet the needs of autistic student and transitioning must improve greatly.

There needs to be a year or two years of transitioning. I feel the schools let our children down. They graduate and don't know where to go or what to do. The most important services for those turning 21 and graduating would be transition services. Transitioning into the community and work programs. Also, if transitioning while in school, following through with placement after graduation with a placement that the child needs to best help them be more independent.

At this point in time the health care system seems to think that once a person is 18 they suddenly do not need services. Adults face grater challenges than they did as a child. If they are able to get into college they have no accommodation available to them. They need a lot of help with housing, employment and dealing with finances. Again, schools need more skills to provide education using more inclusive strategies, Currently it seems to be all or nothing--self contained classroom with other students who have other significant disabilities and require a lot of non-educational attention like personal care Schools are unwilling to provide integrated class time for reasons such as stimming or behavioral difficulties, but will not provide the staffing to address those things in the general ed classroom.

Again, too much pressure to parents to use pharmaceutical interventions, which have long term health consequences. Transition services begin too late--usually not until kids are almost ready to graduate--and focus solely on basic , non-skilled job skills. Not enough focus on health management-how to communicate with their doctor, how to develop skills for a community wage job that is not a janitor. Parents need education early on to plan for their kids independent living and community inclusion and the benefits of not expecting kids to be SSI dependent forever, which keeps them in perpetual poverty.

ADLs -- activities of daily living. Most schools aren't equipped to teach ADLs and yet, ADLs are what kids with ASD need to be taught and not just taught, but learn how to generalize in order to be able to function in the adult world. Without a robust menu of ADLs starting in school, in elementary school and continuing throughout high school , people with ASD can never hope to hold a job or be a part of the community in which they live.

Transitional services for adults with autism who are not able to care for themselves is a huge issue. At present there are not enough facilities or adequate supports for the tidal wave of Autistic children coming. All of the areas listed above need a lot of work to deal with what we as a country will have to deal with.

Services diminish after about the high school time frame which is when we need them the most. Transition: when the child turns 22 the family drops off a cliff. There are NO services or support and it all falls on the family. Housing for adults, as well as all the supports to help them live independently. It would be SO much more cost effective to just be able to access services they need. For instance, my daughter will probably be able to keep a programming job, but will never be able to handle her own money because she would give it all to the first swindler who came along.

Aging out of the system is a huge issue. Autistic adults need continued support after age This condition does not simply go away when children grow up. Job training and placement assistance are severely lacking. Transitions from high school or college are huge and support is very much needed during these times. Transitioning should encompass all types of transitioning after leaving High School into the community and to higher education and should also include vocational, employment, housing, health management, etc. We have no idea what to expect for your child's future.

We want him to be able to live independently and to find work he enjoys. But if he can't even be educated in our public school system appropriately, how will he ever be prepared for an advanced education? How will he be able to support a family? Pay rent? Have social connections? These are constant concerns for us. Gaps include finding information on what will a child be able to accomplish, where to go for help, will a child on the spectrum be able to function in life as an adult. Assistance with adult planning for teenagers is not apparent in rural regions.

Again, autism training programs for preteens and teens for every change in school i. Not underestimating these children at a young age which ends up making them more dependent than they need to be. Need more services for teens and transitioning. More life skills. Transition and adult services is severely lacking in many areas. Again with wait lists. Best practices in postsecondary education and employment are needed, especially as innovative programs are popping up all over the country.

Some are college programs for students with autism, others are all-autism units within existing companies. While these efforts make for great press releases, I am disturbed by the fact that so many of these programs operate on stereotypes e. Many of these programs, particularly in postsecondary education, are very expensive and often hard for families to afford.

In order to promote the most evidence-based, inclusive and affordable practices; much more research is needed in postsecondary education and employment practices. So much is needed here. Adults with severe autism have very few employment or recreational options and these need to be expanded. Also all adults with autism should be able to access life long learning opportunities that include vocational programs, college, and day training programs for those who really need something that carries forward what was available during high school.

Remember that even though some children with Asperger's have very high IQ's, they still need help with practical, everyday tasks. Vocational rehabilitation may be a very real need and they should not be disqualified simply because they have a high IQ. Being smart doesn't always include practical knowledge such as reading maps, bus schedules, knowing how to make their own schedules, applying and interviewing for jobs, etc. More employers need to understand how to work with people with autism. Many don't seem to even want to try and some will find ways to fire people and get around their disability - even though it's illegal.

This entire area is a huge problem. In Texas, 40, kids with Autism will graduate high school in the next 10 years. What will happen to them? What happens when the parents die? The state has to take care of them. We are being reactive, not proactive, and with an ever-aging population of individuals with Autism, this is not only a huge problem but a crisis.

They need education, job training, and career support. Education and employment are the most important to me.