One in 68 Children has Autism

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People First Language

March 29, 2016 3:00 pm Published by

People First Language is an alternative way of talking about individuals with disabilities; it focuses on the person themselves, and not just their disability. People First Language was developed to promote and foster positive communication when speaking to, and about, people with disabilities. It puts the person before their disability, and describes what a person has, not who a person is.

For example, someone who wears glasses does not say “I have a problem seeing”; they say “I wear/need glasses.” The same can be said for someone that utilizes a wheelchair; instead of saying “I have a problem walking”, they say “I use/need a wheelchair.” As it pertains to autism, when we use the term “autistic”, it does not describe that person as a whole. For example, if I say “Bob is autistic”, I am only describing his diagnosis, which does not define who he is as a person. Instead, I can say something along the lines of “Bob is 15 years old, has brown hair and blue eyes, likes music and movies, has autism, and is caring and compassionate.” Having autism is only a part of who Bob is. When referring to someone as “autistic”, we are only referring to a part of them, and may be missing out on the many different aspects of what makes them special and unique outside of their diagnosis.

It is also important to keep People First Language in mind when discussing “high” and “low” functioning individuals. For individuals with developmental disabilities, the areas in which they need support may differ, and using the terms high and low functioning does not give us enough information as to where they need support. Here is a fictional story of two sisters:

Mary lives with her sister, Beth. She uses full sentences to communicate with others, and can travel independently. However, Mary needs assistance with cooking, making her bed, and cleaning her apartment.

Beth does not communicate using verbal language. She needs assistance and supervision while out in the community. However, Beth is able to independently cook, make her bed, and clean her apartment.

In that story, which is high and low functioning? Mary’s deficits are Beth’s strengths, and vice versa. Each woman is “high functioning” in some areas, and “low functioning” in others. Also, although it is nice to hear that your child is “high functioning”, referring to someone as “low functioning” can make an autism diagnosis even more challenging for a family to cope with. Instead, we can say that someone needs more or less support, which does not place them in a high or low category. It is important to be clear about where the individual needs support, instead of giving a general functioning label.

I also find it to be important to limit the usage of “unable to” or “cannot”. These words have a permanent, and oftentimes negative connotation. Even if it is unlikely that someone will be able to complete a certain task, if it is not impossible for them do so, we should not limit them with these terms. Instead, we can utilize terms such as “not yet able to”, which suggest that the individual has the ability to learn a certain skill with the proper supports.

The importance of being “people first” is more about the mindset involved, as it promotes a positive environment for individuals with disabilities and their loved ones. It gives individuals and their families encouragement, and ensures that the individual’s specific wants and needs are addressed, instead of being generalized. Most importantly, it gives us a better understanding of who the person is, outside of their disability. Having a diagnosis of autism, or any other disability, does not define people. We are all people first, and it is important to utilize the language that reflects this.

Kathie Snow has written a great article about People First Language, which is where I generated the information used for this blog. You can click here to see a copy of the article, if you would like to read more on the topic. By being mindful of how we communicate, we are also being mindful of the way that we treat and respect those with disabilities.

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Sara Giangiobbe, MAT serves as a Medicaid Service Coordination Supervisor in QSAC’s MSC Department. She has been serving in a multitude of roles with QSAC since 2004. In addition to her professional role in the field of autism and developmental disabilities, she has a younger brother who is diagnosed with autism. She is a proud sibling and professional, and is also a regular contributor to onQ, QSAC’s blog.

Dealing with a Crisis Situation

December 28, 2015 3:00 pm Published by

When a family who has a loved one with a developmental disability is in a crisis, the last person they think to turn to for help is their Medicaid Service Coordinator. Sure, the MSC can help individuals with developmental disabilities obtain and maintain supports and services, and monitor the individual’s overall well-being, but how are they able to help a family in a time of crisis?

 

Many individuals and their advocates who receive Medicaid Service Coordination are surprised to find out just how valuable of a resource their MSC can be during unexpected, and often daunting, difficult situations. The role of the MSC goes far beyond helping with services and supports. QSAC’s MSC department takes great pride in ensuring that the family, as a whole, has their needs met. We believe that if there is a crisis situation involving a family member, such as facing eviction or illness, this will have a significant impact on the individual that we support in MSC. Therefore, when we find out that a family is in the midst of a crisis, we work closely with that family in order to problem solve, and move forward with more effective options for the future.

 

There are a number of crisis situations that an MSC is able to assist a family in dealing with. When a family is facing eviction, or is having trouble paying their rent, we are able to utilize resources that assist the family in finding appropriate housing options, using government assistance programs such as a “One Shot Deal”, and finding agencies that may be able to assist financially. We work closely with the family to ensure that there will not be further issues going forward. Although we are able to help with temporary fixes to the problem, we also are able to help in finding a permanent solution for the long-term. This includes working on increasing benefits, such as SSI or Food Stamps, to make sure that the family avoids a similar situation in the future, and can live comfortably. We are also able to help find clothes, or even food, when families may be struggling to afford these necessities.

 

Sometimes, a family member becomes ill, or even passes away. In the event of an emergency such as this, where the family member may need extra support in caring for their loved one, the MSC is able to work on finding people to help care for the individual with the developmental disability, or even places to go (should the family need to go away to see an ill family member for an extended amount of time, for example). We are also able to help obtain emergency funding for these sudden illness and death situations.

 

The aforementioned crisis situations may have a great impact on the individual with the developmental disability. They may demonstrate new maladaptive behaviors, and have difficulty coping with the emotions that come from these stressful situations. In MSC, we are able to help obtain additional behavioral supports, that will help the individual manage their behavioral needs more effectively. In addition, we are also able to help obtain counseling, such as grief, sexuality, or even family counseling.

 

In times of crisis, it is important to keep in mind that your Medicaid Service Coordinator is there to help guide you through difficult circumstances. We are able to utilize a number of resources and supports to assist individuals with developmental disabilities and their families when they are in need. If you or your loved one has an MSC, please keep in mind that we are always here to help, and we will always work with you to ensure your needs are met.

 

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Sara Giangiobbe, MAT serves as a Medicaid Service Coordination Supervisor in QSAC’s MSC Department. She has been serving in a multitude of roles with QSAC since 2004. In addition to her professional role in the field of autism and developmental disabilities, she has a younger brother who is diagnosed with autism. She is a proud sibling and professional, and is also a regular contributor to onQ, QSAC’s blog.

The Importance of Employment for Individuals with Autism

September 28, 2015 3:00 pm Published by

For as long as I can remember, I have looked forward to having the opportunity to work. After all, we ask children in elementary school what they want to be when they grow up. We are encouraged to work hard in school, so that we can go on to have successful careers.

But what about those who are diagnosed with autism or other developmental disabilities? A recent study found that 1 in 3 young adults with autism had not found gainful employment, nearly seven years after graduating. Many adults with autism are given volunteer opportunities, or part-time, unpaid internships. Although these are important opportunities in order to help them increase their vocational skills, there comes a time when these individuals are ready to seek out meaningful employment, and receive compensation for their hard work.

Individuals with autism work diligently to become more independent across all areas of their lives. From the moment they start receiving services, children with developmental disabilities work on goals that will help them become more independent. For children, learning how to become more independent consists of working on Activities of Daily Living (ADL) skills, such as brushing their teeth, or getting dressed by themselves. As they grow older, learning to become more independent consists more of working on Independent Living (IL) skills, such as cooking and cleaning, traveling, and learning to manage finances.

The first time any of us really earn our own income is when we get a job. Whether this is part-time or full-time, we finally have the opportunity to earn our own money (the key words here being earn, and own). There is a certain sense of satisfaction and pride in being able to have your own money, and be able to do many more things as a result. Having a job, and earning wages, exponentially increases our independence.

For those on the autism spectrum, there are a number of obstacles that stand between them and gainful employment. Many individuals struggle with social cues, managing their emotions, dealing with different sensory triggers, following directions/instructions, planning and organizing, adapting to changes, and so on. Even the standard small talk of an office can be overwhelming to someone who has autism.

That being said, many adults on the spectrum would rather find ways to work through the challenges of being in a work environment, rather than not having the chance to work at all. It can be incredibly discouraging and frustrating to not have the opportunity to make money for yourself, and be able to use that money how you want to. The money we earn from working allows us to spend time with our friends, participate in different activities, buy clothes and other items for ourselves, even be able to eat what we want to! As much as there are different ways to supplement income for individuals with disabilities, it is not the same as earning your wages based on the work you have done. There is a difference between receiving an income, and earning one.

Many adults on the spectrum are aware of the limitations on what they can do when they do not have paid employment. In my experience, speaking with adults with autism about their goals, several have expressed to me how much they desired to have a job, just like I do. They were able to connect the fact that we were close in age, and that having a career is something they would like to do by a certain age as well. It is difficult to encourage someone with autism to become more independent, if they do not feel that they have the opportunity to do so.

Thankfully, there are more opportunities and initiatives for individuals with developmental disabilities to obtain employment. OPWDD is providing new ways for individuals to seek out meaningful work across the state. I have also observed more individuals attending college, which opens the doors for them to pursue a number of different careers. More initiatives are taking place to broaden the job opportunities that exist for individuals with developmental disabilities. With the proper supports in place, adults with autism can find success in different careers. For example, with the guidance of a job coach, an individual can learn to overcome their specific deficits and challenges in order to perform well at a job of their choice.

There are no guarantees in terms of whether or not any of us can obtain employment, disability or not. However, adults with autism and other developmental disabilities should be provided with the same opportunities as the rest of us, if it is something they would like to do and if it would be appropriate for them. Being a contributing and independent member of society is something that many adults on the autism spectrum highly value, and obtaining and maintaining gainful employment is an important way for them to achieve this.

 

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Sara Giangiobbe, MAT serves as a Medicaid Service Coordination Supervisor in QSAC’s MSC Department. She has been serving in a multitude of roles with QSAC since 2004. In addition to her professional role in the field of autism and developmental disabilities, she has a younger brother who is diagnosed with autism. She is a proud sibling and professional, and is also a regular contributor to onQ, QSAC’s blog.

Relationships and Autism

August 10, 2015 3:00 pm Published by
One of the key markers of autism is significant social deficits. Even on opposite ends of the spectrum, having difficulties with social cues and relationships is consistent. That being said, this is not to say that people with autism do not want to have meaningful relationships with others. In fact, many of the people I have helped support have expressed a desire to become closer to their families, make friends, and even find a romantic partner.Cute-People
 
When we think about “natural” supports, we think about those in our lives whom we are naturally connected to. Then, we have “paid” supports, such as doctors, whom we pay to support us in different facets of our lives. Individuals with autism often have more paid supports in their lives than natural ones. This is in contrast to those of us without autism, who find ourselves with more natural supports in our lives than paid ones. It is important to encourage and support individuals with autism to gain more natural supports, as well as enhance existing natural supports to have even more meaningful relationships.
 
Many of the services that are available to individuals with autism have a common goal of providing the necessary supports to further their socialization skills. For school-age children, some of these services include weekend/holiday recreational programs, after school programs, and summer camps. Children are provided with the opportunity to interact with their peers, and engage in meaningful activities together. They are encouraged to initiate interactions with their peers, as well as increase their socialization skills so that their interactions are appropriate.
 
For adults, there are also a number of recreational activities that provide the opportunity to engage in activities with peers. Some of these programs involve community activities, where individuals socialize with their peers while also becoming a bigger part of their community. Accessing community resources allows for individuals with autism to be a part of their natural community, and have truly meaningful relationships with those in their environment.
 
There are also social skills peer groups, and other topical groups such as self advocacy. In a self advocacy group, individuals with autism (and other developmental disabilities) gather together to talk about rights and responsibilities, and being able to advocate for one’s own wants and needs. In QSAC’s self advocacy group, the group decides which food they would like for the evening, and then share a meal together just as friends often do when they come together. Topics are discussed over food, much like those of us without autism do with our friends. Although these do not happen as often as regular self advocacy meetings, there are also events such as speed dating, which provide them with the opportunity to pursue romantic relationships. Existing members of our self advocacy group, as well as potential new members, recently went on a day trip to Six Flags in New Jersey. The most special part of the day, in my opinion, was watching bonds form; not just between the individuals we were supporting, but also the relationships we were forming together. There was not such a sense of “individuals” separated by “staff”, but more of a sense of friends enjoying their time, together, at the theme park.
 
Although individuals with autism have difficulty with social interaction, it does not mean that they do not have the desire to be close to others. By providing them with the appropriate supports and services, they will be able to have meaningful and supportive relationships in their lives. This will allow their lives to become enriched, more meaningful, and certainly more independent.

 

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Sara Giangiobbe, MAT serves as a Medicaid Service Coordination Supervisor in QSAC’s MSC Department. She has been serving in a multitude of roles with QSAC since 2004. In addition to her professional role in the field of autism and developmental disabilities, she has a younger brother who is diagnosed with autism. She is a proud sibling and professional, and is also a regular contributor to onQ, QSAC’s blog.

Transitioning Into Adulthood

May 4, 2015 3:00 pm Published by

As we approach the end of the school year, many families find their loved ones drawing closer to graduation, and beginning the transition into adulthood. In New York State, students age out of the public school system at the end of the school year in which they turn 21. Thankfully, there are many supports and services available for individuals with disabilities as they prepare to move into life outside of school.

New York State law states that any student that receives special education services, and has an IEP, must begin transition planning by age 15. Transition plans become a key component of the IEP process, and are reviewed and updated each year. The student, their family, and the IEP team, will work together to create the transition plan. A student’s interests, goals, and skills, will be assessed and evaluated to design the plan that best meets their needs.

If the student receives OPWDD services, their Medicaid Service Coordinator can be a vital asset to the transition planning process. Service coordinators are able to assist with making referrals to appropriate services, providing linkage to resources, and advocating for the student, and their family. There are numerous options within the OPWDD system for students and families to consider during the transition process.

Day Habilitation services are designed to facilitate the development and enhancement of skills that will allow individuals to lead more independent lives. Adults receiving day habilitation services are also given the opportunity to become more involved with the community by performing volunteer work. Recently, there has been more development of “Day Habilitation Without Walls” programs. These programs are less site-based than the traditional day habilitation model, and focus more on individualized, community-based objectives (such as travel training).

Prevocational services assist adults who would like to work, but need to further develop their employment skills in order to be successful in the workplace. Individuals will work on general training skills, so that they may prepare to seek employment in the future.

Programs such as Supported Employment (SEMP), and the Employment Training Program (ETP), provide adults with the supports needed to obtain and maintain competitive employment. They will work with a “Job Coach” in order to find a job that matches their interests and skills, prepare for interviews, and successfully perform their job duties. During the IEP transition planning process, a student’s vocational skills will be assessed in order to find the program that best fits their needs.

Self-Direction (formerly known as CSS) is an alternative to traditional OPWDD services, in that the individual and their family are responsible for selecting and maintaining services, based on that person’s individualized needs, including the hiring of staff. Self-Direction allows for more flexibility in obtaining supports that best fit the individual’s needs that they may not be able to receive through the traditional route of services. There are ways to incorporate agency-supported services into self-direction as well, should this be something that the individual is interested in. Self-Direction is great way to be able to transition into adult services after graduation, and acquire the supports that the individual needs in order to be successful.

I have recently seen an increase in the amount of students that go on to attend college classes after graduation. Part of the transition planning process will assess the student’s academic skills and needs, to see if college is an appropriate option.

With careful planning, and active involvement from the student and their family, the transition from school to adulthood can be smooth and successful. By utilizing different supports such as school staff, and service coordinators, your loved one will continue to gain independence, and become more involved in their community.

 

 

OPWDD Employment Services: http://www.opwdd.ny.gov/node/668

OPWDD Day Services: http://www.opwdd.ny.gov/opwdd_services_supports/supports_for_independent_and_family_living/day_services

OPWDD Self- Direction: http://www.opwdd.ny.gov/node/763http://www.opwdd.ny.gov/opwdd_services_supports/supports_for_independent_and_family_living/consolidated_supports_and_services/self-direction-redesign-qa

New York State Transition Services: http://www.p12.nysed.gov/specialed/transition/home.html

Advocates for Children’s Transition Guide: http://www.advocatesforchildren.org/sites/default/files/library/transition_guide.pdf?pt=1

Person Centered Planning more effective in helping Individuals with Developmental Disabilities plan for the future

March 2, 2015 3:00 pm Published by

Throughout the course of our lives, each of us has been presented with having to make decisions about the path we wanted to take. Whether it is furthering our education, choosing a career path, or even starting a family, we ultimately have the power to make our own decisions that will impact our future. Although we may ask others for help and guidance, we are undoubtedly a part of this process.

 

For those individuals with developmental disabilities, this is unfortunately not always the case. Due to a variety of cognitive, communication, and social deficits, it isn’t always easy for these individuals to make their wants and needs known to others. Instead of being a vital part of their life planning process, many times these decisions are left in the hands of others. As a sibling of an individual with autism, I have experienced this first-hand. Helping to make decisions for my brother, in terms of what programs he should participate in, and what goals he should work on, is a natural part of caring for someone with a disability. The same can be said for professionals in the field. We look to make up for the deficits of those we support by doing our best to help make the choices for them that will ultimately be in their best interest.

 

However, there is a way to combine the genuine, caring nature behind wanting to help make these decisions for these individuals, while also making sure their voices can be heard. The concept of person centered planning is not a new one, but it is one that is now being implemented more often, and is becoming more encouraged and supported by OPWDD.

 

Traditional planning involves looking at existing services and supports, and trying to select what fits best for each person’s specific needs. This system does not take a close look at the person’s natural and community supports, or look at the bigger picture of what they want out of their own lives. With person centered planning, the individual is the “star of the show” so to speak, and they are given a platform in which they can discuss what their hopes and dreams are. From there, their “circle of support” works on utilizing a variety of resources (including non-traditional ones) in order to best help them achieve these goals.

 

Certainly, this is not always easy, especially if the individual does not use verbal language to communicate. That being said, we are now being given access to a number of resources to help even those individuals be a part of person centered planning.

 

It also is not always easy to help someone work towards a dream that may not necessarily be easy to obtain. What is important, however, is that we give our individuals the same opportunities in life that we are given. Each of us has the power to pursue their dreams to the fullest extent possible. We may not always get there, but we are given the chance to try. It is important that even those with developmental disabilities are given the chance to try, and they may discover new talents and abilities as a result.

 

Person centered planning continues to evolve and grow, and is now reaching more people than ever. It allows those with developmental disabilities to have more control over how their life path will go, and it also allows for those people who are close to them to help them truly lead meaningful and fulfilling lives.

An Explanation On Self Advocacy

December 15, 2014 3:00 pm Published by

Being able to advocate for one’s self is something that we don’t often think about on a regular basis. For those of us without communication deficits, it is easy to let others know what you want in your life. You are in charge of your own decision making; from small things such as wanting to go to the store to buy a bottle of soda, to the larger things such as choosing a career path. This ability to advocate for your personal wants and needs does not come as easily to those with autism and other developmental disabilities.

Recently, QSAC started a self advocacy group, which is designed to empower individuals with disabilities to speak up for themselves. The group promotes independence, and educates its members about their rights and responsibilities. Over the last several weeks that the group has been held, I have seen tremendous growth from each person. Individuals with disabilities are being encouraged to think about their future, and what they would like to obtain in order to lead meaningful and fulfilling lives.

This is not to say that self advocacy undermines or eliminates the need for having family, friends, and professionals as advocates. Much like with our own decision making, it is important to receive feedback and support from the important people in your life to help guide you along the way. Similarly, sometimes the people in our lives do not agree with the decisions we make. It is important to consider safety and other concerns involved with each decision, and work together to find a way to make things happen successfully with minimal risk.

If you have a loved one with autism or other developmental disability, there are a number of ways you can encourage self advocacy, and work with them to understand how they can speak up for themselves. Even if your loved one does not use verbal language to communicate, it is still possible for them to learn to advocate for themselves, in whatever way they can. The journey of self advocacy can begin with small choices in their daily lives, and eventually move to bigger choices of what their goals are for their future.

The ability to advocate for one’s self is a vital part of learning responsibility, and working towards a bright, independent future. By encouraging individuals with autism and other developmental disabilities to advocate for their own wants and needs, we will be able to better support them, and help reach their fullest potential.

ABOUT US

QSAC is a New York City and Long Island based nonprofit that supports children and adults with autism, together with their families, in achieving greater independence, realizing their future potential, and contributing to their communities in a meaningful way by offering person-centered services.

QSAC pursues this mission through direct services that provide a supportive and individualized setting for children and adults with autism to improve their communication, socialization, academic, and functional skills.