Service or Support? Two Case Studies

Posted by Patty Manko on Thu, Feb 19, 2015 @ 04:47 PM

Service and supports

The Difference between Service and Support 

Today, advocates and professionals often use the word “support” to include anything that someone may need to live in his or her community. Often in human or disability services, an individual has to accept a change in location or compromise in the type of supports needed. 

The two examples below describe the differences between support and service.

Case 1 - After transitioning from Early Intervention into their city’s school system, a family was looking forward to having their child attend their local elementary school. In their transition meeting, they were informed that their son would be sent across town to the one after-school program established to accommodate children with disabilities. However, the family wanted their child to make stronger connections with children at their local school. After a series of meetings, the school district agreed to allocate “supports” through a voucher or other procedure to increase the capability of the child’s local school. This was accomplished by hiring a part-time staff person and budgeting some training for the other teachers at the local after-school program.

Case 2- After years of having a successful job-coaching arrangement while in high school, an individual with disabilities turned age 22 and was told that he had to enter a sheltered workshop for employment services 10 miles away from his home. It was a disappointment for his parents because their son had done so well working in the community. The policy for the adult services system had been to invest resources into local workshops in an effort to provide services to adults. Feeling that this was not appropriate for their child, the parents had many meetings with the disability agency and contacted their legislator  in an effort to develop a job-coaching arrangement similar to what they had before to support their child in the community. Fortunately, they succeeded and were given the ability to interview three agencies that would provide them with the supported employment services that met their son's individual needs. 

The preceding examples highlight the differences between cases in which services are standardized to meet the needs of many and those in which supports are developed around an individual’s needs. However, one must realize that every state will have varying degrees of flexibility built into their support and service delivery system. In planning your child's future, it is suggested that you push to have supports that are built around your child's particular needs. Placing emphasis on supports involves developing a program around the needs of the individual. An environment that is driven by providing services frequently builds standardized programs for all. 

 

 The Life Cycle of Services and Supports  

Throughout our lives we change and evolve. This is no different for individuals with disabilities. As a child, most of the options are consistent with options that other children face. As your child approaches the teen years, it will be vital to change perspectives and help him or her exercise more control and opinions concerning daily life. This will set a foundation that will assist your child with disabilities to build a life that he or she feels is consistent with inner desires and dreams. Avoid the temptation to accept the first service that is offered to you; instead, enter the process with a clear idea of what you and your child are seeking.

 Although the Special Needs Planning Timeline covers multiple planning pressure points, there are three major periods where supports and services change regardless of your location. The major ages that trigger a change in services and/or supports are at your child’s birth, at age 3, and at age 22. There are additional pressure point ages and changes that trigger key planning considerations. These include transition planning at age 16, guardianship and Social Security or SSI at age 18, as well as the death, disability, or retirement of a parent.

Birth to Age 3 When you discover your child has a disability, it is important to obtain Early Intervention services as soon as possible. In addition, look for “parent-to-parent” programs where you can connect with another parent who is raising a child with a disability. Other parents can mentor you and share their information and knowledge. Apply for the Early Intervention services even if you think you are not quite ready to start them, because there may be a waiting period. Research shows that the earlier infants receive stimulation and further professional supports, such as physical, occupational, and speech therapy, the better the child does in reaching milestones.

Age 3 to Adolescence Transition to school is a very important period. At age 3, the school system is responsible for offering educational and related services. In addition, if a child has special health care needs, such as a chronic illness, a disabling condition, or a frequent need for medical technology, check out eligibility for your state’s TEFRA program (the Tax Equity and Fiscal Responsibility Act of 1982) or Special Health Care Needs Program. Early Intervention staff will be of great assistance to explore such options, as well to help with the transition to school.

You may face some challenges during the school year, such as:

  • Helping your child develop a social network
  • Obtaining an appropriate education program while helping your child get included in the everyday life of the school
  • Helping your child learn about his or her body changes during adolescence 
  • Making sure you work with your child, beginning at age 16 years or earlier, to develop transition goals at school and outside school to prepare for adult life
  • Eventually developing a plan with your child and others who care that reflects his or her dreams and desires

Age 22 years and Beyond Becoming an adult isn’t easy for any of us. If your child needs adult services for any aspect of his or her life, you should start learning about the funding and programs offered by the time he or she is age 18 and still a student. Waiting until the last minute may mean limiting or delaying options in adulthood. Different organizations have materials that you can read to help prepare for this stage, but the foundation of the plan should be developed during the teen years.

Attend our panel of experts: Creating a Circle of Supports March 25, 2015

Tags: supports for special needs

Service or Support ? Two Case Studies

Posted by Patty Manko on Wed, Jul 02, 2014 @ 03:26 PM

Service and supportsThe Difference between Service and Support 

Today, advocates and professionals often use the word “support” to include anything that someone may need to live in his or her community. Often in human or disability services, an individual has to accept a change in location or compromise in the type of supports needed. 

The two examples below describe the differences between support and service.

Case 1 - After transitioning from Early Intervention into their city’s school system, a family was looking forward to having their child attend their local elementary school. In their transition meeting, they were informed that their son would be sent across town to the one after-school program established to accommodate children with disabilities. However, the family wanted their child to make stronger connections with children at their local school. After a series of meetings, the school district agreed to allocate “supports” through a voucher or other procedure to increase the capability of the child’s local school. This was accomplished by hiring a part-time staff person and budgeting some training for the other teachers at the local after-school program.

Case 2- After years of having a successful job-coaching arrangement while in high school, an individual with disabilities turned age 22 and was told that he had to enter a sheltered workshop for employment services 10 miles away from his home. It was a disappointment for his parents because their son had done so well working in the community. The policy for the adult services system had been to invest resources into local workshops in an effort to provide services to adults. Feeling that this was not appropriate for their child, the parents had many meetings with the disability agency and contacted their legislator  in an effort to develop a job-coaching arrangement similar to what they had before to support their child in the community. Fortunately, they succeeded and were given the ability to interview three agencies that would provide them with the supported employment services that met their son's individual needs. 

The preceding examples highlight the differences between cases in which services are standardized to meet the needs of many and those in which supports are developed around an individual’s needs. However, one must realize that every state will have varying degrees of flexibility built into their support and service delivery system. In planning your child's future, it is suggested that you push to have supports that are built around your child's particular needs. Placing emphasis on supports involves developing a program around the needs of the individual. An environment that is driven by providing services frequently builds standardized programs for all. 

 

 The Life Cycle of Services and Supports  

Throughout our lives we change and evolve. This is no different for individuals with disabilities. As a child, most of the options are consistent with options that other children face. As your child approaches the teen years, it will be vital to change perspectives and help him or her exercise more control and opinions concerning daily life. This will set a foundation that will assist your child with disabilities to build a life that he or she feels is consistent with inner desires and dreams. Avoid the temptation to accept the first service that is offered to you; instead, enter the process with a clear idea of what you and your child are seeking.

 Although the Special Needs Planning Timeline covers multiple planning pressure points, there are three major periods where supports and services change regardless of your location. The major ages that trigger a change in services and/or supports are at your child’s birth, at age 3, and at age 22. There are additional pressure point ages and changes that trigger key planning considerations. These include transition planning at age 16, guardianship and Social Security or SSI at age 18, as well as the death, disability, or retirement of a parent.

Birth to Age 3 When you discover your child has a disability, it is important to obtain Early Intervention services as soon as possible. In addition, look for “parent-to-parent” programs where you can connect with another parent who is raising a child with a disability. Other parents can mentor you and share their information and knowledge. Apply for the Early Intervention services even if you think you are not quite ready to start them, because there may be a waiting period. Research shows that the earlier infants receive stimulation and further professional supports, such as physical, occupational, and speech therapy, the better the child does in reaching milestones.

Age 3 to Adolescence Transition to school is a very important period. At age 3, the school system is responsible for offering educational and related services. In addition, if a child has special health care needs, such as a chronic illness, a disabling condition, or a frequent need for medical technology, check out eligibility for your state’s TEFRA program (the Tax Equity and Fiscal Responsibility Act of 1982) or Special Health Care Needs Program. Early Intervention staff will be of great assistance to explore such options, as well to help with the transition to school.

You may face some challenges during the school year, such as:

  • Helping your child develop a social network
  • Obtaining an appropriate education program while helping your child get included in the everyday life of the school
  • Helping your child learn about his or her body changes during adolescence 
  • Making sure you work with your child, beginning at age 16 years or earlier, to develop transition goals at school and outside school to prepare for adult life
  • Eventually developing a plan with your child and others who care that reflects his or her dreams and desires

Age 22 years and Beyond Becoming an adult isn’t easy for any of us. If your child needs adult services for any aspect of his or her life, you should start learning about the funding and programs offered by the time he or she is age 18 and still a student. Waiting until the last minute may mean limiting or delaying options in adulthood. Different organizations have materials that you can read to help prepare for this stage, but the foundation of the plan should be developed during the teen years.

We have been there both personally and professionally. We can help.

Tags: supports for special needs

Turning 22: Beyond the IEP

Posted by Patty Manko on Thu, Jan 23, 2014 @ 11:41 AM

diary of a dreamOur latest Diary of a Dream blog features Susan and James Nadworny's moving forward post-age 22, while revisiting their IEP experiences in a very cathartic way.  Click on the image to the right to read the blog.

Turning 22 is a new chapter and every family situation taken along with the needs and preferences of each individual, creates a unique situation to which there is no one right or wrong answer. We can help you determine financial options and strategies using both government benefit resources and personal resources to provide for your child's residential needs. We make it our business to know as many agencies and supports available to help families during this transition period. We believe that individuals with disabilities have a right to live as independent a life as possible, in the community or in their family home. 

In this spirit, we offer a list of resources for families-click here to access. As an additional resource, you may click here to access a partial list of residential and support service programs for young adults in transition in our (Greater Boston) area. We are here to help, please contact us for more information.

 Contact us

 

 

 

Tags: transition planning, supports for special needs, residential special needs

MFOFC Leadership Series offered in January

Posted by Patty Manko on Thu, Dec 12, 2013 @ 09:57 AM

Massachusetts Families Organizing for Change is pleased to announce our 2014 Family Leadership Series.

describe the image Northeast & Metro Boston Regions 2014

DATES
* Friday and Saturday, January 31 & February 1, 2014
* Friday and Saturday, February 28 & March 1, 2014
* Friday and Saturday, April 11 & 12, 2014
* Saturday only April 26, 2014 (One day only)
LOCATION
  Courtyard by Marriott Boston/Woburn North 
700 Unicorn Park Drive
Woburn, MA 01801

 Click here for registration materials

 The Series focuses on supporting families and individuals to live in their communities as naturally and typically as desired. Applications from families with children or adult family members of any age who are Department of Developmental Services eligible are encouraged to apply.

The Family Leadership Series has a three-fold purpose. The first is to offer information about family leadership and the history of family involvement in the disability arena. The second is to assist families in creating a vision for their family member. The third is to connect them with information on how families can become a critical voice that influences local and state policy and funding streams for all persons with disabilities.

The Family Leadership Series is comprised of three Fri/Sat (2) day workshops and one final day wrap-up Saturday session.

The three two-day workshops (which includes an overnight at hotel) will focus on:

Initiative and Leadership - Participants are given information on the background of the family support movement, leadership, advocacy and the significance of self-advocacy, how to effectively advocate towards creating change and ways to influence funding and delivery systems.

Creating A Vision - Participants learn how to create a vision for your loved one and innovative ways to think about community living and family support, best practices and meaningful options. Families are supported to "imagine better" and to create a vision, with and for their family members, that becomes a guide for their leadership and advocacy.

Policy Making at the Local, State and Federal Level - family members receive information on how to develop networks with legislators and families, on how to access and control resources that affect family stress and satisfaction and how to use legislative change to procure resources.

Our one final day wrap-up session will focus on:

Taking Care of ourselves – Relax, laugh, and experience the value of taking care of you.

Then a Family Leadership Graduation Celebration!!!!!!!!!!

This extraordinary opportunity is free for participants. Food and overnight lodging for participants is paid for by the Department of Developmental Services, area organizations and businesses. Families who attend the Series are required to do the following:

  • To attend all four sessions including three Fri/Sat two-day sessions (staying overnight at the hotel) and the final one-day wrap-up Sat session.
  • To participate in activities/experiences during the sessions and to complete assignments/reading between each session.
  • Commit to reach out to their legislators about their need for family support and tell their personal story to their elected officials.

We expect that, upon completion of the Series, families will continue to advocate for and work to create change for their families/loved ones and will be willing to help other families in their areas to do the same. We also expect that you will join with MFOFC statewide network, as we all advocate for policies, practices and funding that maximizes our loved ones support and to live meaningful and enviable lives in our/their own community.

Events are held throughout the year within Metro Boston & Northeast areas and across the state to support your active voice for your loved ones and family.

Click here for more information about the MFOFC.

Tags: supports for special needs, special needs workshops, special needs presentations

The 18.5%

Posted by Patty Manko on Fri, Nov 22, 2013 @ 03:12 PM

Anatomy of a Special Needs Child


Source: Anatomy of a Special Needs Child

Tags: supports for special needs, disability supports, special needs services, disability services

Welcoming Art Lovers with Disabilities

Posted by Patty Manko on Fri, Nov 01, 2013 @ 11:33 AM

 

Our Fall Workshop Schedule

 

This article from the New York Times features the Museum of Fine Arts and the Museum of Science, both in Boston, as having multimedia and multi-sensory resources for individuals with disabilities to enjoy the art alongside their family and friends without disabilities.

 Below, volunteer Annie Leist guides Mercedes Austin, 17, at the MFA in Boston.

describe the image
October 25, 2013

Welcoming Art Lovers With Disabilities

By TANYA MOHN

ON a recent Friday night, the Metropolitan Museum of Art in New York held its first public exhibition of original art made in its “Seeing Through Drawing” classes. Participants — all blind or partly sighted — created works inspired by objects in the museum’s collection that were described to them by sighted instructors and that they were also allowed to touch.

In another gallery, a tour in American Sign Language was followed by a reception for deaf visitors. And on select Fridays, new “multisensory stations” invite all guests — including those with a range of disabilities — to experience exhibits though scent, touch, music and verbal imaging, or describing things for people with vision impairment.

“The Met has a long history of accessibility for people with disabilities,” said Rebecca McGinnis, who oversees access and community programs. As early as 1908, the museum provided a “rolling chair” for people with mobility issues, and in 1913 held talks for blind public school children, she said. Today, there are programs for people with disabilities nearly every day.

Such efforts by museums are likely to increase. In 2010, about 56.7 million people, or 18.7 percent of the population, had some level of disability, according to the Census Bureau. And both the number and percentage of disabled Americans are expected to increase in coming years because of the aging of the population, greater longevity and more cases of certain types of learning disabilities, said the Open Doors Organization, a nonprofit group in Chicago serving disabled people.

“Museum designers have used a great deal of imagination, much more than is required by law, and do remarkable things,” said Lex Frieden, a professor at the University of Texas Health Science Center in Houston and director of one of the regional centers to help compliance with the Americans with Disabilities Act of 1990.

Mr. Frieden, whose spinal cord injury after a traffic crash in 1967 left him a quadriplegic, said museums made commitments to accessibility before the 1990 law and even earlier federal legislation. The Smithsonian Institution has long been a leader in the field; its definitive guidelines to accessible exhibition design are used globally, he said.

Early adaptations to overcome barriers to sight were mirrors on ceilings, video screens at varying heights and lowered pedestals and cases “to a sweet spot of visual field” for all users, including wheelchair users, said Beth Ziebarth, director of the Smithsonian’s accessibility program.

Innovations continue. A new program allows families with children on the autism spectrum and cognitive disabilities to arrive before opening hours and to receive materials in advance to get familiar with the building and exhibits.

In a crowdsourcing effort, the Smithsonian last year began inviting visitors to provide audio descriptions on mobile devices of the nearly 137 million objects in its collection — an example of how measures primarily to help people with disabilities can often benefit the public.

Museum of fine arts boston      met
 Mobile Multimedia guide at the MFA Boston   Students at the Met in 1922 

 

Similarly, when the Museum of Fine Arts in Boston opened its Art of the Americas wing a few years ago, it took a universal approach to its mobile multimedia guide. Hannah Goodwin, the manager of accessibility, said if a person with a vision or hearing disability is visiting the museum with a nondisabled friend, “you use the same devices, with access to the same content.”

In Manhattan, the Whitney recently introduced vlogs — video tour blogs — whose segments are recorded by deaf hosts in American Sign Language. But since they are also captioned in English, they have become popular even among people without hearing impairments.

“It’s a brave new world out there” said Larry Goldberg, director of the National Center for Accessible Media, a research and development department at WGBH in Boston. “There is such a range of new technology, and museums are taking advantage of it.”

For example, the Art Institute of Chicago plans to experiment with 3-D printing to reproduce artworks and allow visitors, like those with Alzheimer’s disease, to explore the texture, scale and other sensory elements of objects in ways not otherwise possible.

The Guggenheim’s mobile app includes closed-captioning for videos; enlarged-text capability, verbal description tours and advanced screen-reader technology that enables full navigation through touch and voiced description of everything on the screen.

Indoor navigational services are coming to museums, Mr. Goldberg said, that are ideal for people with visual impairments. For example, ByteLight software translates location signals from modified LED lights to smartphone apps to help visitors interpret exhibits or navigate within the museum.

The Museum of Science in Boston expects to broaden its testing of ByteLight technology in coming months. “For indoor location awareness technology, it is the most promising,” said Marc Check, the museum’s director of information and interactive technology. “Technologies like GPS are effective outside, but much less precise inside.”

The museum is also experimenting with interactive touch-screen technology. It has built a large touch table, like a giant iPad, that will give people with visual and fine motor skill limitations access to content by swiping and gesturing. A prototype, Mr. Check said, is expected to be in place at an exhibit in the next few months.

Smaller museums are offering services for the disabled, too. In the summer the Norton Museum of Art in West Palm Beach, Fla., joined with local mental health agencies in a program for adults with mental health or substance abuse issues. The North Carolina Museum of Art in Raleigh recently added nine newly acquired Rodin bronze sculptures to its touch tours. The Samuel P. Harn Museum of Art at the University of Florida conducts off-site programs for residents of nursing homes and retirement centers who can’t visit the museum.

For exhibitions and performances at museums and other sites, the Leadership Exchange in Arts and Disability, at the John F. Kennedy Center for the Performing Arts in Washington, D.C., advises on things like assisted-listening systems or how to stage sensory-friendly productions. When Eric Lipp, executive director of Open Doors, wanted to improve accessibility at Chicago cultural institutions through its “Inclusive Arts and Culture Program” several years ago, he turned to the exchange.

Since then, the Steppenwolf Theatre Company in Chicago has enhanced its services and outreach. Live audio description and American Sign Language interpretation during performances have improved in quality and are offered at more performances. New services have been introduced, like touch tours that allow blind and low-vision guests to go on stage before shows to become familiar with the space.

The Steppenwolf and others “go above and beyond,” said Mr. Lipp, who is partly paralyzed. “And they’ve done it for no other reason except the social benefits.”

 

 

 

 

Tags: supports for special needs, disability supports, Individuals with disabilities and the arts

What The Shutdown Means For Disability Services

Posted by Patty Manko on Thu, Oct 03, 2013 @ 12:17 PM

disability absence management resized 600By Michelle Diament | October 1, 2013

 

As the first U.S. government shutdown in more than 17 years takes hold, some programs benefiting people with disabilities will continue with business as usual while others grind to a halt.

The shutdown, which began Tuesday, comes after Congress failed to reach a deal to fund the federal government for the new fiscal year starting in October. Under a shutdown, some services considered “essential” will continue operating while many other government activities will come to a standstill as 800,000 federal workers are sent home until a new budget takes effect.

Here’s a look at how the shutdown will impact programs that people with developmental disabilities rely on:

SOCIAL SECURITY Benefit payments will continue to be distributed on schedule to individuals receiving Social Security and Supplemental Security Income. Local offices will be open, but only to perform select services.

MEDICAID Services provided by Medicaid will largely proceed as usual since an advance appropriation ensured that states receive funding for the program on Oct. 1. However, disability advocates say they are worried that the shutdown could exacerbate payment delays that providers of long-term services and supports are already facing. “The long delays have put many of our affiliates in almost untenable cash flow positions and further delays may cause some to cease Medicaid services,” said Katy Neas, senior vice president of government relations at Easter Seals.

HOUSING The U.S. Department of Housing and Urban Development says it will not be able to provide further funding to local housing agencies during the shutdown. However, most local agencies already have enough money to fund rental assistance vouchers for the month of October, more than half of which help the elderly and people with disabilities.

SPECIAL EDUCATION Schools won’t see much impact immediately, with states receiving $22 billion in special education funds on schedule this month from the federal government, the U.S. Department of Education said.

DISABILITY RIGHTS ENFORCEMENT The U.S. Department of Justice says that civil litigation, which includes the enforcement of disability rights laws like the Americans with Disabilities Act, will be “curtailed or postponed” to the extent possible.

RESEARCH Developmental disability surveillance programs — which track the prevalence of such conditions — will come to a halt during the shutdown, said Barbara Reynolds of the U.S. Centers for Disease Control and Prevention. Meanwhile, the National Institutes of Health will not make any new grant awards for research.

Copyright © 2013 Disability Scoop, LLC. All Rights Reserved.
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Tags: disability legislation, supports for special needs, disability supports, special needs services, disability services, government supports

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