Category: Education

People with Disabilities Have Major Impact as Board Directors

Ever been on a board of directors for a nonprofit? If so, you know it’s a pretty big responsibility.

You have meetings to go to, some more exciting than others. You have to pay attention to the budget and be sure money is spent in a responsible way. You attend fundraisers, bring your friends, and share your passion for whatever the organizations stands for.

And hopefully, the board you join represents a diverse community inclusive of those that the organization serves. For nonprofits serving people with disabilities, that simply means that the board should include people with disabilities.

Yet, for many this appears to be a challenge.

Challenges or excuses?

There are lots of reasons given for not having people with disabilities on boards.

One common excuse is boards shouldn’t include people that are actually being served by the agency. Yet it seems to be fine if it is a nonprofit with an educational mission and the board includes parents of children served.

Of course there is always the problem with comprehension. A person with an intellectual disability may not understand the discussion and may not even be able to read. But I have to ask, have you ever been on a board and sat through the financial report? Look around and tell me how many board directors are really grasping the details of the profit and loss being shared. Trust me; not many.

My personal favorite is the transportation challenge. How will they get there if they don’t drive? The fact that most board members are not only capable but very willing to pick up another person is never even considered.

Making it happen

This month we will speak to Board members at several organizations that addressed these challenges and made a conscious decision to recruit, train and support people with disabilities as board directors and advisors. We will also speak with a board member who is a respected member of the board and also happens to be a person with an intellectual disability.

As they share their experiences, the challenges don’t appear to be so challenging anymore. In fact, people with disabilities are not only capable of being board members; their valuable contributions clearly have a lasting impact on all.

Healthy Sexuality / Relationship Resources for People with Disabilities

couple staring away from shoulder up

Here are some helpful sexuality / relationship resources for people with disabilities, professionals, educators, and parents.

 Helpful Links

Healthy Relationships, Sexuality and Disability Resource Guide 2011 
Be sure to bookmark this new resource link listed on the Massachusetts Department of Public Health’s website.  Here you will find a treasure trove of information that includes curricula, trainings, websites, help-lines, support groups, books and CD/DVDs appropriate for both youth and adults with a wide range of disabilities.

NICHCY – Sexuality Education for Students with Disabilities
National Dissemination Center for Children with Disabilities’ site  includes various resources for parents and educators. Scroll down page to find materials with specific disabilities in mind.

Sexuality & Disability:A Guide for Parents
This guide is provided by Alberta Health Services for parents of child, teen and adults.

Relationship Groups for Men & Women with Developmental Disabilities

The following agencies in Massachusetts offer group sessions on relationship and sexuality topics for men and women with developmental and intellectual disabilities. 

  • Options and Possibilities in Reading
    Contact Paula Thompson LICSW at 781-454-7824 or optionspossibilities@gmail.com
  • Lifelinks in Chelmsford
    Oct. 5, 2011, Parent Training, 6pm – 8 pm
    Oct. 15, 2011, Seminar for individuals with disabilities, 9am – 2pm
    Contact Rachel Ward-Sullivan at 978-349-3040 or rwardsullivan@lifelinksinc.net

Trainings / Learning & Development for DDS Support Staff 

Human Sexuality, Relationship and Social Skills training of Trainer Series
Pat Carney provides this annual eight week session to DDS agency and provider staff.  This is also available to a limited number of other related professionals.
Contact patricia.carney@state.ma.us with questions.
To register call 413-284-5082 or email Jeffrey.Monseau@state.ma.us

Sexuality Educators
The following professional teams offer sexuality training  for people with intellectual/developmental disabilities in agencies, school systems and on an individual basis.    

  • Diane E. Westerman
    IN2UHealthyRelationships
    401-499-5231 or westwooman@aol.com
    Ken Renaud
    IN2UHealthy Relationships
    401-785-2100 or in2uhealthyrelationships.com
    Will travel to any part of Mass/RI/eastern CT 
  • Rebecca H. Barry
    508-505-6188 or rbarry@arcnbc.org
    Mary Ellen Goodwin
    508-446-5112 or Maryellen@betacomm.org
    Will travel anywhere in Mass/RI

Sexuality and People with Developmental and Intellectual Disabilities

picture of couple from shoulders up looking away

As a sexuality educator, I have been honored to meet individuals with developmental disabilities, their families and paid caregivers in a variety of circumstances. Many understand and embrace the idea of people with disabilities as sexual beings. Some struggle with the topic, and are not quite sure if they are ready to pursue additional information.

Regardless of their comfort level, the people I meet are seeking assistance to help their client, loved one or themselves understand and express their sexuality in safe, healthy and fun ways.

Defining Sexuality

In my experience, I have learned that having a broader understanding of what sexuality is provides everyone involved with information and tools to overcome hesitation and begin to proactively build supports for the person. This is the definition I use:

Sexuality is the integration of physical, emotional, intellectual and spiritual aspects of an individual’s personality that express maleness and femaleness. It begins at birth and affects all the senses; it is not limited to genitals. Sexuality involves identity, reproduction, sensuality and intimacy.

From: Who Cares? A Handbook on Sex Education and Counseling Services for Disabled People. (Cornelius, D., Chipouras, S., Makas, E., Daniels, S. 1979. University Park Press, Baltimore.)

A definition that make sense

I like this definition for several reasons.

First, by saying that sexuality is both part of our personality and a lifelong part of who we are as human beings, it emphasizes the inherent nature of sexuality for all people.

Second, it lists four aspects of our personality that are integral to our sexuality: physical, emotional, intellectual and spiritual – clarifying that the physical aspect is only one area of sexuality, not the entire deal.

Finally, it identifies four avenues through which we both develop and express sexuality: identity, reproduction, sensuality and intimacy.

Sexuality is a part of us all

It is important to have a good idea of what sexuality entails so that the thought of it doesn’t scare us away from providing education, support and opportunities for people with intellectual and developmental disabilities (I/DD) to fully develop this important aspect of their personality.

Sexuality is always a part of who we are and we, as family members and paid caregivers, must create healthy and safe ways for children and adults with I/DD to build their own ways of understanding and expressing sexuality.

Patricia Carney
Patricia Carney

 

Resources for Adult Family Care in Massachusetts

hands holding hands

This month Kathy Kopitsky, Director of the Adult Family Care (AFC) program at the Minute Man Arc in Concord has shared insightful blogs of how Adult Family Care is a great option to living alone, nursing home or other institutional care settings.  Adult Family Care is an exciting and growing statewide program in Massachusetts.

What is Adult Family Care?

The term Adult Family Care (AFC) is also known as Adult Foster Care.  AFC is a MassHealth program which supports individuals age 16 and older who are unable to live independently due to a medical, physical, cognitive or mental disability.  AFC participants live with trained paid caregivers who provide daily care with activities of daily living (ADLs).

Certain relatives of a MassHealth member may serve as that member’s AFC caregiver.   Spouses, parents of a minor member (including adoptive parents), or any “legally responsible” relative of the member may not become an AFC caregiver.

For additional information about Adult Family Care, click on MassResources.org link.   Scroll down to the A-Z Program list on the left and click on Adult Family Care / Adult Foster Care (AFC). Here you will find excellent comprehensive information about adult family care eligibility, caregiver information, and how to apply for AFC services.

Locating AFC Provider Agency

Currently there are fifty seven AFC provider agencies in Massachusetts.   To locate an AFC provider near you:

  • Contact your local Aging Services Access Point (ASAP) to request list of AFC providers in your area.  To locate your local ASAP call 1-800-AGE-INFO (243-4636), TDD/TTY 1-800-872-0166, or go on-line to ASAP Locator
  • Contact Beth Shelton, MassHealth AFC Program Manager, at (617) 222-7485 or by email at beth.shelton@state.ma.us

Additional Resources

Click here for Adult Family Care / Adult Foster Care programs that are listed on the New England INDEX website.

Family Care-giver Handbook – Home Care
provides great information about home care services, assessments of physical, health and nutrition needs; and how to find and pay for services.

A Caregiver’s View of Adult Family Care

The dictionary definition of “caregiver” is “an unpaid relative or friend of a disabled individual who helps that individual with his or her activities of daily living.” Statistics show that as many as one in five adults in the US are caregivers.

Many people provide care giving services with nothing more that the motivation of their heart, yet sometimes it is because there is no other way for a loved one to get care. And even though so many of us are doing the work, being a caregiver remains a very stressful and lonely thing to do. Where do you go for help? Who will pay your bills if you need to stop working to be a caregiver? Where do you call if you get sick? Who can you call with your concerns? What will happen to your family member if something happens to you?

Support for caregivers is available

As a member of the National Family Caregivers Association, our Adult Family Care program is particularly equipped to help caregivers through the stressful aspects of their work. So much more than training and networking, being a part of an AFC program gives caregivers an outlet for their concerns and essential support. Of course there is the required training, and plenty of opportunities for networking and learning more. However, nothing tops the opportunity for face to face contact over a cup of coffee. That is what George’s parents’ discovered.

George with his parents“Caring for George when he returned from his day program was becoming harder and harder as his needs were changing” George’s mother Aurora told us. “We knew he needed more support than we could give him. But ‘how’ and ‘who to turn to’ were questions we did not know how to ask”.

Aurora shares their family’s story

“We attended an AFC workshop and right away started working with Kathy Kopitsky to see if we would qualify for services. The enrollment process seemed to take many months. Now, with greater financial assistance, George will begin to receive added support and services. And for us, we will have the help we need to keep George at home. We know that a day will come when we can no longer care for George, but for now, his home is with us, and this fills us with great happiness.”

Next week’s blog will provide a list of resources for Adult Family Care Programs. Check it out. After all, everyone needs nurturing and support, especially if they are providing care for others.

Adult Family Care Provides Essential Supports

We approached the home in the afternoon, just before everyone returned from school. The mother was late to meet us. She was busy. There was toys and adaptive equipment throughout the first floor of her home. She sat down with a sigh; she looked exhausted. I looked at her and smiled. I introduced myself as the Director of the Adult Family Care (AFC) program and asked how we could help her.

She looked around her kitchen, and then wearily turned to us and responded, “Anything you could do to lend a hand around here would be appreciated.” I then explained to her what the AFC program was.

Defining Adult Family Care

The Adult Family Care program provides financial and clinical assistance to qualifying family members and their caregivers.

Minuteman Arc Adult Foster Care Team
The AFC team from Minuteman Arc includes from left, Lori Davis, RN; Mieke Monen, Director of Residential Services; Kathy Kopitsky, AFC Director; and Ashley Poor, Care Manager

We work to assist in caring for loved ones at home. We support all people who, because of medical, physical, cognitive or psychiatric problem, cannot safely live alone.

To be eligible a member must be on MassHealth and need help with Activities of Daily Living (ADLs) on a daily basis. That is, they must need help with mobility in or outside of the home, bathing, dressing, toileting, eating or transferring. A registered nurse and care manager conduct the assessment to determine eligibility. The assessment is an extended and detailed conversation about the sort of help your loved one needs.

The AFC program provides assistance through monthly visits by the nurse or care manager or both, networking opportunities, training and financial support. The financial support would be useful to help with acquiring respite services and other pay-as-you-go services. We can also help caregivers locate community resources.

The role of the family

As the qualified caregiver you have responsibilities too. To qualify as a caregiver, there is an application process and a home inspection that needs to be done. We will also complete a criminal history (CORI) check. These items will be taken care of before we do the assessment for eligibility discussed earlier.

The van pulled up and Ron emerged. He ran into the house, looked at us briefly and then ran upstairs. Mom smiled sheepishly. I raised my hand and said, “No need to apologize. We understand. Now, shall we get started on the paperwork?”

Adult Family Care through a Provider’s Perspective

Kathleen Kopitsky
Kathleen Kopitsky

I first took on the Adult Foster Care (AFC) program as a part time project. It has grown so rapidly that I quickly began to work on it full time. After 25 years of working in group homes and day programs, the change in job responsibilities was welcome. And although I will admit that pouring over regulations and standards is not the most exciting way to spend your day, this work has been wonderful.

Much of my career in human services has been with adults, some of whom spent many years in our state institutions. Their families long gone or maybe they just gave up hope that anything better would or could happen for their loved one. I became their surrogate family.

Families face unimaginable challenges

I confess I never gave much thought to the families of the people I helped move out of the institutions; didn’t see much point to it since we never met. I never considered the difficulty of birthing and raising a child with a disability. I never considered the heart-wrenching decisions that need to be made that leads to institutionalization. Never thought about the sacrifices and the adjustments a family makes. Never thought about a time when institutionalization was the only humane option in this country.

I quite honestly, did not give much thought to how families manage life when a member has a disability or a debilitating disease. I simply had no idea of the lengths to which families go to take care of each other and a member with special needs. That may be a reflection of my own family experience; it is clearly a reflection of my ignorance.

Then I had the honor of meeting some of the families in our AFC program. WOW! I had no idea. What a privilege it is to know these families. They move mountains and create miracles every day. I stand in awe.

Adult Foster Care prevents institutionalization

I did not know about the AFC program until I stared working on it. Now I want everyone to know that there is help, both clinical and financial. Gone are the days when institutionalization was the only option. With the AFC program, we can help and support families who choose to take care of a loved one at home. Our aim is to help delay or totally prevent the need for institutional care. There are ways; and we can assist. Let us know how Adult Foster Care may help you or someone you love.

ACCESSING HOSPICE CARE FOR PEOPLE WITH DISABILITIES

two white roses

Through our blogs this month we have learned that people with disabilities, like everyone, deserve to live out their lives with respect and dignity. And when faced with a choice on where to receive end of life care, many people are choosing to die at home.

Through the stories shared, we also learned about hospice and their essential role in providing services and support to everyone in the process.

The Hospice Care:  A Consumer’s Guide to Choosing Hospice Program is a helpful guide to make educated decisions about end-of-life care.

In Massachusetts there are sixty two licensed hospice programs.  If you are looking for a hospice program in your area, the following website is extremely helpful.

Hospice Palliative Care Federation in Massachusetts
(781) 255-7077

Alphabetical Listing of Hospices
Hospice Locator by Town
Hospice Locator by Services
Hospice Residential Facilities

Caring Connections offers information on the health and wellness of the family caregiver, bill management, home care help & community outreach resources.

VNA Hospice Care covers towns in Eastern Mass
Works with individuals with intellectual disabilities in group homes in collaboration with the Department of Developmental Services.  Staff works closely with residential and day program staff to help individuals function to their best capacity, in comfort and joy.

On our website, New England Index also has a listing for hospice care at home or in a residential setting.

DisabilityInfo.org – Hospice Care -At Home
DisabilityInfo.org- Hospice Care – Residential

It is important to note that the VNA Hospice Care program in Woburn was the only resource I could find that works specifically with individuals with intellectual disabilities in group homes. They are available to offer support and training to service providers on hospice services and philosophy. For more information about hospice for individuals with intellectual disabilities contact VNA Hospice Care at (781) 569-2888 or Nancy Ledoux,VNA Hospice Care Chaplain,  voice mail at  (781) 569-2822.

Let us know if you have experience with any other hospice programs in the state that you personally would like to share.

Supporting a Person Who Chooses to Die at Home

Kathy KopitskyThis week I am pleased to introduce a guest blogger, Kathy Kopitsky, who shares her personal experience in supporting Ralph and several other people with disabilities who chose to die at home.


As a manager of residential programs I have a lot of meetings to attend. And even though I try to not let my emotions get in the way, it is really hard sometimes. It is really hard to not let my emotions get involved when meeting about something I feel strongly about personally: the right to die at home.

Over the years, I have had the privilege of helping six individuals and their families enter into hospice and come to die at home. Realize that “dying at home” meant a group home where other individuals continued about the business of their daily lives.

Understanding a need to go home

In the beginning, when I first pushed for someone to die at home no one was happy. His name was Ralph and he had no family left, except those of us at the group home. He was temporarily in a nursing home recovering from serious wound care when he had a heart attack and ended up in the ICU at a Boston Hospital.

As I stood in that ICU next to his bed, I thought about visiting him every day at the nursing home over the past few weeks. And every day I saw him, he wanted to know if I was there to bring him home. That was all he wanted, for me to bring him home.

It was at his side in the ICU, with him unconscious and intubated, that I decided I would fight to bring him home with hospice care; that that was the right thing to do. The seven other gentlemen he had been living with, a few for over 20 years, deserved the right to be with Ralph in the end. The agency was not happy. The state was not happy.

I made the arrangements anyway. I made them, because Ralph wanted to go home.

Challenges faced

As the final pieces were put into place, and everything from equipment, to staffing, to transportation had been arranged, I leaned close to Ralph in that ICU bed and told him as quietly and assuredly as I could, that I was going to take him home now.

I watched his face relax and he breathed his last breathe.

I was holding his hand tightly and I cried. Not only because I had just lost a friend, but also because I had failed to do the one thing I really wanted for Ralph: to bring him home to die, his home, surrounded by the people who knew and loved him the best.

A lesson learned

Since my experience with Ralph, I have encouraged families and staff to talk about death, dying with dignity and hospice care as early as they can in anyone’s illness. I have the seen the benefits of using hospice care as I have helped five other people die at home surrounded by the people they love.

The lesson from Ralph is simple; it is never too early to take good care of those we love.

Hospice Program Embraces People with Disabilities

hand of an elderly person being held by a younger one

This week I introduce Nancy Ledoux, a chaplain for VNA Hospice Care in Woburn, MA.  Nancy brings over 12 years of experience providing support for people with disabilities choosing to die at home.

Hospice team addresses challenges

Nancy began the discussion by explaining some of the unique challenges faced.

“For a person with a disability, going home may be with their family but it also may be going to a group home. Either way, we are there for everyone. In the group homes we work with staff, housemates and the family when involved. We have a strong team including a primary nurse, social worker, home health aide and my role as chaplain.”

As we talked further, Nancy spoke of her collaborations with organizations that serve people with disabilities.

“Over the last 8 years, groups of area nurses from the Department of Developmental Services (DDS) started meeting with us to streamline the regulations, making hospice care easier to offer in group homes. As a result, more vendors are choosing to offer end of life care.”

Dying at home is a life experience for everyone

Supporting a person who chooses to die at home has an impact on everyone involved. Nancy shared her personal thoughts.

For people with disabilities, “Dying can be so bewildering, but choosing to die at home is universal. Giving the choice is human and humane.”

For staff, “When young or from a different culture they may find it unconscionable to let a person die with comfort measures only. But the social worker and I encourage them to talk and really listen. It is very heartening to see the change that occurs”.

For family, “If a family member is in a group home, they may want to camp out there. Staff and roommates can feel elbowed out, but with support they learn to respect and support each other. ”

And for the housemates, “They get it. In fact, they get it better than a lot of us do. We encourage them to sit with their friend, which many choose to do. By being there through the whole process they also get to see they will not be abandoned when their time comes”.

Hospice program embraces the entire community

This conversation with Nancy gave me hope.

At a time when we worry about budget cuts effecting services for people with disabilities, Nancy reminds us there are programs in our communities committed to offering their services to people with disabilities.

And as a result, even through one of the most difficult times in a person’s life, everyone wins.