Category: Community

Do you need help at home?

a person helping an older personAs a future public health worker, I want to learn more about programs that help disabled people. One of them is Adult Foster Care.

Who is eligible?

  • A person with a disability
  • Must be 16 years of age or older.
  • Can not live alone
  • Must need daily assistance with one or more activities of daily living for example: bathing, dressing or eating.
  • Must be approved by a doctor.

Do you have to pay?

NO!
The caregiver will receive tax-free money.
For more information visit Massachusetts Council for Adult Foster Care.

Mental Illness Knows No Prejudice

Human Head Silhouette with Puzzle Pieces as the BrainMental illness knows no prejudice. It does not recognize gender or age. It does not recognize wealth, poverty or fame. It does not recognize social status, race, or religion. Nor does it recognize ignorance or denial. Mental illness is a powerful thing. It lives and grows; it affects anyone it chooses. It has no limits or boundaries.

Cause
We must look at mental illness analytically, and not as this source of “evil” everyone keeps talking about. We need to look at the root cause of terrible acts, not just the means to the end.

In regard to acts of violence, society continues to look at reactive measures, such as random forms of gun control (i.e. banning high capacity magazines and assault type rifles), and increased jail sentences. I’m not suggesting these aspects shouldn’t be addressed. They are contributing factors and require a realistic focus. But, they are not the answer in matters such as these.

We need to get ahead of these acts, not behind them. We need to be proactive and adopt a complete, multi-dimensional approach in addressing the root causes behind these perverse acts. Most notable are the tragedies involving gun violence, which tend to be enlarged by the media. But let’s not forget the incidents of NFL players who have fallen victim, or the celebrities who have lost their battles with the day-to-day struggles of these same illnesses. I can go on and on. I think you get the point. Although there are many differences between these acts, they all have one common factor underlying the root cause…mental illness.

Experience as a Guide
I have worked in the mental health field for a number of years now. I have seen the effects of mental illness on human beings. I have seen the repeated cycle it tends to take, and how the victims of these illnesses often become the offenders. This chain must be broken in order to stop this violence. Early intervention and a multi-disciplined approach are the keys.

Unfortunately, the mental health system in this country does not adequately address this issue. We disregard it. Funding is not given to sufficiently address these matters. They have fallen by the wayside. We have closed institutions and sent mentally ill people to the streets. We mainstreamed affected children into regular classrooms and just labeled them “problematic”.

We continuously place a stigma on mental illness. This makes it difficult for social acceptance, causing it to repress and eventually resurface in different forms. We need to think at a higher level as a society. Blaming such events on poor societal control is not prudent. Once again, dig a bit deeper. Americans work twice as much as other countries. Yet we have far less time away from work (major stressor) as other countries allow. Perhaps this might have an effect on mental health in America?

Where do we go from here?
Please know I am not attempting to justify or minimize these acts. I am a father, a husband, and human service worker. I too struggle to understand these tragedies. I cannot even begin to imagine the pain caused in these situations for the victims, families, and the offenders. They certainly need support in many ways. I pray they will find peace and eventually heal. I have faith in the resilience of the human spirit.

Mental illness is not a choice, just as addiction and sexual orientation are not. It chooses you. It is not a wonder. It is real. We must address it as a society and as a whole. I encourage you to find ways to accept and support mental health issues in our communities. We must advocate for these issues at all levels within our government. We must work together to ensure adequate resources are made available to address this deficit and encourage further research. We must get at the root of the cause before a spark ignites it.

Lastly, as human beings, we must also demonstrate compassion, support, and tolerance towards each other, and have faith we will prevail. Just as mental illness knows no prejudice, neither does mental health.

For more information, visit:
Improving Mental Health and Addressing Mental Illness
National Institute of Mental Health

Including Children and Youth with Special Needs in Religious Education Settings

children with notebooksMany parents of children with special needs choose not to put their children in religion classes and youth groups. There are many reasons for this. Some parents are afraid their child will have trouble during a quiet moment and disrupt the class. Others fear volunteer instructors will feel burdened by their child’s needs or behaviors. Some might feel ashamed of their child or afraid of what their child might do or say. They might avoid such public settings. Indeed, there are challenges in creating programs for all children, but these guidelines can help things go smoothly.

What Parents Can Do

Parents sometimes choose not to be direct about their child’s special needs. This causes extra stress in religious communities. For example, the instructor and program director might worry about a child, and wonder if the parents know their child has a learning disability or ADHD.  When parents are forthcoming about their child’s needs, supports can be put in place. The leader and child can get off to a good start when parents meet with the program director and talk about how to best help their child.

What Religious Educators Can Do

Including youth and children with special needs will bring about some challenges, but religious educators help.

  • Adults can be added to improve the adult-to-child ratio.
  • Extra time can be scheduled for parent communication.
  • Volunteer staff can be offered support and training.
  • Grants can be obtained to cover assistive technology, American Sign Language interpreter services, or professionally trained one-to-one aides.

What Inclusion Can Do

Many benefits come from including children with special needs in religion classes and youth groups.

  • Children with special needs receive religious instruction and feel part of the group.
  • All children and teens gain experience from being around a variety of peers. They likely learn that others are not so different than themselves.
  • As more children and teens with special needs attend classes and services, the community culture changes and including all children becomes the usual way of doing things.
  • Parents of special needs children enjoy the support of their community.

Integrating children with special needs in religious education settings benefits the community as a whole. This, in turn, has a positive effect on our society.

When You Need A Friend

happy young girls raising hands together in park.
Childhood friendship

Making and keeping friends is hard for anyone. This seems to become more difficult when people have a disability involving communication, the characteristics of which are “deficits in using communication for social purposes” or “persistent deficits in social communication and social interaction across multiple contexts.” Most kids can say they have friends in the neighborhood, school friends or church friends. For kids with Autism Spectrum Disorder or Social (pragmatic) Communication Disorder, developing friendships requires a lot of effort and provokes anxiety. It appears that the parents or teachers must make efforts to create friendships. I have been creating such friendship opportunities for my children all through their lives. When my daughter was young and attending an inclusion classroom, I called parents of typically developing children to arrange play dates for her. Some parents were really nice and met me half way by bringing their child to play with mine or meet her at the playground. I also called parents of the other children with special needs in the classroom. Those were the ones that happily met me all the way, for they were experiencing the ostracism that comes from having social skills challenges. Of course, that was possible as long as we were attending the local school. When my child was placed out of district, it became more difficult to have play dates and it required a lot of effort and strategic planning. Teachers had to be convinced of the need for friendships so that they would share our telephone number with a child that my daughter talked about at home. Then, we needed to call the parent, introduce ourselves, explain our situation and suggest a meeting place that was neutral and equidistant. Seeing a friend involved travelling, visiting, travelling and avoiding a meltdown.
Many times I questioned who really wanted the friends – my daughter or me? Did I want for her something that I thought all other kids had? Was she happy with one or two friendly acquaintances or did she need several friends? She is now an adult and still friendships continue to be hard. She needs help navigating the adult social world, where there are more unspoken conventions than in the children’s world. Participation in activities that are not located in our town means that she meets people from other towns and since she doesn’t drive, she needs transportation to and from meeting places. However, now that she is an adult, she can tell me that friendships are important to her and we make all possible efforts for her to see friends. That is something we can all understand as we all need friendships. What is hard to understand is that as children with disabilities become adults the opportunities that they have to make friendships with neurotypical individuals are almost nonexistent. There are programs organized by disability organizations to encourage socialization. Such activities are usually attended by people with disabilities and not many neurotypical individuals attend. Furthermore, those neurotypical individuals who do attend are often younger – they notice less the symptoms of socially and communicationally challenged persons, especially their lack of maturity. Yet younger neurotypical children do not serve as peer with age-appropriate interests. We must continue to look for opportunities to provide individuals with disabilities the opportunities to make meaningful social interactions in the communities where they live. I am not sure how to accomplish this but I think the Real Lives bill might be a step forward.

Municipal Advocacy: Disability Commissions

town building
Town Building

Approximately 150 cities and towns in Massachusetts have a Commission on Disability, does yours?

Disability Commissions are an advisory boards appointed by municipal leaders formed to help promote compliance with federal and state laws, represent the interest of individuals with disabilities in municipal government, and act as a resources for individuals with disabilities.

Common issues addressed by many Disability Commissions include handicapped parking spot abuse and implementing curb-cuts on sidewalks, but each commission is able to respond to the local needs of their community.

Almost all Commissioners are volunteers, and at least half of the members of each Commission are individuals with disabilities. Most Commissions meet monthly, and meetings are open to the public.

I encourage you to find out if your city or town has a Disability Commission, and if they do, make a point to attend the next Commission meeting.

View a list of Disability Commissions in Massachusetts available from the The Massachusetts Office on Disability web site

Cultural Appropriation and Disability: The Problem with Using Wheelchairs as Decoration and Portraying Individuals with Disabilities as Inspirational

Caricature of Lady Gaga in Wheelchair by Lauren Lange
Caricature of Lady Gaga in Wheelchair by Lauren Lange

The cultural appropriation of disability is a major obstacle in the struggle to achieve a just society in which individuals with disabilities are treated with dignity and receive access to supports and services to live richer, self-determined lives.

This article addresses two forms of cultural appropriation. The first form is the use of images of individuals with disabilities by able-bodied persons to promote a charity campaign/advocacy issue or to describe a current event. The second form of cultural appropriation relates to the use of images or objects associated with disability for performance art that is unrelated to disability advocacy.

When non-profit organizations or news corporations use images of individuals with disabilities that are meant to be inspirational or cause an emotional reaction, the population of individuals with disabilities as a whole are held back. This is because the images contribute to the reputation that individuals with disabilities are helpless, pitiable, and/or inspiring. The problem with being seen as inspiring is that often it stands in the way being seen as an equal. A recent example is a news story about two North Carolina State students on the football team who sat next to a student with a disability at lunch (news story). This story was widely circulated and was even posted by AUCD on Facebook. The troubling implications of this story were passionately described by Karin Hitselberger in her blog post, “Being My Friend Does Not Make You a Hero.” Hitselberger calls for change by writing: “It’s time for us to stop being inspired and surprised when we see disabled and nondisabled people engage in everyday interactions with one another. It’s time for us to stop praising able-bodied people for associating with or being friends with disabled people” (claiming crip blog). It was later revealed that the students eating lunch together were already friends and had no idea their photo was taken (real story of photo).

Those who are in a position to use these images should ensure accuracy and carefully consider the unintentional messages this content could be sending. Seeking advice from individuals with disabilities is recommended.

It is equally troubling when images or objects associated with disability are used to captivate or shock audiences in performances that are unrelated to disability advocacy. Musicians Lady Gaga and Rick Ross have used this form of cultural appropriation in live performances and music videos. Of the several live and on-screen performances in which Lady Gaga used a wheelchair, her performance as a wheelchair bound mermaid has received the most attention. Following the performance, Gaga was attacked by a group of people who threw eggs at the young starlet. It remains unclear if the attackers’ outrage was related to her inappropriate wheelchair use. Later, when Gaga and musician Bette Midler engaged in an argument about whether or not Gaga stole Midler’s act, neither of them seemed to be aware of the fact that the act was offensive.

In the case of Rick Ross, the rapper performed in Lil Wayne’s music video, “John,” while seated in a wheelchair with adornments to simulate movement called spinners. The only purpose of the wheelchair was shock value.

It was disturbing to see these musicians make light of the vital use of wheelchairs by using them for decoration. Kristin Guin, founder of Queerability, agrees. Guin, who identifies as autistic and bisexual, recommends bringing the inappropriate wheelchair use to the attention of the performers. “We would hope that the celebrity apologizes and agrees to remove the content,” states Guin.

We in the community of disability activists should not be paralyzed by anger over these instances of cultural appropriation. Instead, we should create opportunities to educate those who have yet to understand how to perceive and treat individuals with disabilities as equals. I call on anyone who encounters this type of behavior to make their opinions known.

Visions of Community | Saturday, March 8, 2014 – Seaport World Trade Center – Boston

guest speakers Michael K. Yudin. Dana Yarbrough, and Brooke Yarbrough, at the visions of community conference 2014
Visions of Community 2014

The Federation for Children with Special Needs held its annual statewide conference “Visions of Community, a Conference for Parents of Children with Special Needs and the Professionals Who Serve Them” on Saturday, March 8 at the Seaport World Trade Center in Boston. It was a wonderful day! Energy and inspiration, and hope and expectation were felt throughout the day by the 900 people who attended the event.

Two keynote presentations for Visions of Community were Michael K. Yudin, Acting Assistant Secretary for Special Education and Rehabilitative Services for the US Department of Education and Dana and Brooke Yarbrough. Dana is the Executive Director of Parent to Parent of Virginia. Her daughter Brooke operates Brooke’s Happy Tails Dog Boarding, a microenterprise she started in 2012. Michael Yudin’s message centered around three key principles: inclusion, equity and opportunity. His message was down to earth and resonated with parents and professionals. Yudin believes that we are to change the culture of expectations and truly believes that “parents are the change agents.” Dana Yarbrough and her daughter Dana spoke about transition to adulthood and again the issue of expectation was brought forth.  Dana expressed that in her experience as a parent she values having progressed from advocating for her daughter to learning to advocate with her daughter.

Breakout workshops at Visions of Community included topics on special education advocacy, managing challenging behaviors, transition to adulthood for students with disabilities, inclusion, policy initiatives, assistive technology, healthcare, bullying, parent leadership opportunities, early childhood, autism and more. In addition to approximately 30 sessions in English, a full conference strand of many of these topics was offered in Spanish, Portuguese, Chinese, Somali, and Vietnamese and also ASL interpretation. The conference Exhibit Hall featured about 84 vendors and resources for families.

The conference offered a wonderful opportunity for families and professionals to network and learn about important resources.  Just to illustrate this point, a staff member related his experience in passing two parents in the hallway outside of the Waterfront Ballroom as they were leaving the session on the Emotional Journey of discovering your child has special needs. They were exchanging the types of benefits they had so far been able to acquire for their children of similar ages. What impressed the staff member was that even in the most remote crevices of the World Trade Center, parents were helping parents find the support they desperately needed, and the Federation conference is a major contributor to facilitating and initiating those interactions and relationships. That reflection exemplifies the mission of the Federation, which is the commitment to listening to and learning from families, and encouraging full participation in community life by all people, especially those with disabilities. The Federation places a tremendous value on parents because of the contributions they make as the leaders of families toward supporting the health, education, and development of their children at home and in society.

It was a day filled with information, hope, inspiration, support and the opportunity to establish links and relationships for parents and professionals. We only have to wait until March 7, 2015 for the next year’s conference to feel that energizing wave again.  In the meantime, if you want to learn more about the Federation and its projects, please visit www.fcsn.org.

To see past keynotes speakers and award recipients go to fcsn videos

Advisory Committee and Board Resources for People with Developmental Disabilities

CAB member Douglas Russell, Jr. of Worcester with DDS Commissioner Elin Howe and Regional Director, Terry O’Hare.
CAB member Douglas Russell, Jr. of Worcester with DDS Commissioner Elin Howe and Regional Director, Terry O’Hare.

Here are some great opportunities for people with developmental disabilities to have a voice and share their perspective on advisory and policy making boards.

Citizen Advisory Boards (CABs)

Individuals with intellectual disabilities are encouraged to join the Massachusetts Department of Developmental Services (DDS) Citizen Advisory Board (CAB) .  The advisory board meets monthly at the local DDS area office.  Citizen Advisory Board members give input on services,  share concerns that  individuals face and provide suggestions for improving services.  Board members also participate in evaluating programs through Family Citizen Monitoring.

As part of the legislative advocacy effort, CAB members also meet with legislators to inform and educate them on important issues. Most importantly, members host recognition events to acknowledge outstanding services.

For additional information about DDS CABs go to Frequently Asked Questions.

Individuals interested in joining a Citizen Advisory Board can obtain a CAB Application or contact Ralph Edwards, the DDS Director of Office of Citizen Leadership, at ralph.edwards@state.ma.us or call (617) 624-7755.

Additional Resources

Boardsmanship Inclusive and Accessible
This workbook from People First of California Inc. clearly explains the role of board members and preparation for serving on a board.

Get on Board and Make Difference
Effective practices for including people with developmental disabilities as new members on boards and committees is presented in this document.

Facilitation Tips
The Board Resource Center provides this “plain language” check-off list for advocates to ensure they have a voice in public policy.

Facilitation Guide
This Guide is for facilitators offering support to people with developmental disabilities on advisory boards.

The Guide – NASDDDS Handbook on Inclusive Meetings and Presentations
The guide includes resources for conducting accessible meetings, presentations and a checklist for involving people with developmental disabilities.

Not Another Board Meeting, Guide to Building Inclusive Decision-Making Groups
This publication is helpful for support personnel working with people with developmental disabilities interested in being involved in decision making groups.  To order copies call Becky Thrash at (508) 945-9941 or email ocdd@ocdd.org . You will only be charged for shipping cost.

 

Rainbow Support Group: A welcoming place for LGBT people with disabilities

Rainbow triangle

This week we are pleased to introduce our guest blogger, Pauline Bosma, Project Consultant for the Rainbow Support Group of Massachusetts.

Groups provide support  around the state

The Rainbow Support Group (RSG) is for people with intellectual and developmental disabilities to help them be comfortable with who they are. We have four support groups in the state of Massachusetts and one in Rhode Island. The RSG is part of Massachusetts Advocates Standing Strong (MASS) and is supported by the Department of Developmental Services (DDS).

The RSG is for people who are gay, lesbian, bisexual, transgendered (GLBT) or who have questions about their sexual identity. The groups are hosted by different agencies across Massachusetts, with members of each group writing their own agenda.

Some of the activities the groups have done are: talking about rights, health issues like AIDS, and understanding what GLBT means. Some groups have attended Pride Day events in Boston and Northampton. It is up to the individual groups to decide what is important and interesting to them.

The importance of a safe environment

I think it is important to have RSG because there used to be no support within the intellectual disability system for people who use services and are lesbian, gay, bisexual, transgendered or questioning their sexual identity. Support is important so people can live the lives they want to. The RSG gives them a safe, comfortable environment to talk about their issues, decide when they are ready to come out, and how to come out to other people.

Pauline Bosma
Pauline Bosma

I started RSG in 2004 with help from the Kennedy-Donovan Center. RSG is modeled after a similar group in New Haven, CT. For several years, there was only one group, in Central Mass. In 2008, I went to Commissioner Howe of DDS, along with MASS coordinator Ed Bielecki, DDS trainer Pat Carney and MASS coordinator Elaine Spier-Kalmar from western MA. We asked the commissioner about trying to expand the groups across the state. Commissioner Howe has supported a small project through MASS that has allowed us to grow to where we are now.

If you are a person who is interested in learning more about the RSG, you can reach us at: rainbows_58@yahoo.com , mass1998@earthlink.net , Patricia.Carney@state.ma.us or call: 1-866-426-2253 (1-866-IamAble).

The Role of Shared Living Providers in Supporting Healthy Sexuality of the People they Serve

Shared living is one of the residential service models available to individuals with intellectual/developmental disabilities (I/DD) who receive services from the Department of Developmental Services. Shared living services provide support to the individual in a natural, family environment.

An important focus of shared living is to foster relationships and promote community inclusion. Sexual expression can be a part of some relationships.

A provider’s role

Shared Living Providers (SLP) can support the person living in their home to develop a positive sexual identity. By providing a supportive, non-judgmental environment, the
SLP has the opportunity to assist the individual with building a healthy self concept, positive self esteem and confidence to discover who they are as an individual.
Another area that a
SLP can influence is the person’s experience of intimacy and building healthy relationships. It is very important for a
SLP to work with the individual to build a home environment that is safe and comfortable. It takes time and acceptance of the individual for who they are to build a trusting relationship and create an intimate environment where the person feels at home.

Some things to remember

• A person with I/DD is a sexual being and has the same need for relationships as everyone else.

• It takes time for a person to adjust to a new living situation and being around new people. Trust has to be built between everyone. Making consistent time for 1:1 attention is a great way to make a person feel accepted.


SLPs have to know their own limits; sexuality is complicated. The topics being raised may challenge your comfort level or may be topics you don’t know well enough to confidently discuss. As a
SLP, if you need help, ask your case manager at the agency.
• Take the person’s questions seriously. They are struggling to understand their feelings and learning how to express them.

Together we can make a difference in how a person with I/DD understands their sexuality. In turn, they can learn how to enjoy their relationships in safe, healthy and fun ways.

Chad Linstruth
Chad Linstruth