Tag: disabilities

When A Disease Has No Name

I am a patient advocate who works with people with medical problems and disabilities. When name tag with Hello my name is Undiagnoseda doctor diagnoses a person with a disease, it can be sad and scary. But, once a problem has a name, people can learn more about it. They can talk or write to others with the same problem. They can join groups or clubs for their disability. They can visit doctors and hospitals with special knowledge of their problems.

Sadly, some people never get a name for their disease or disability.

These people visit many doctors and hospitals. No one knows what is wrong. There are no clubs or groups for their illness. Doctors do not know how to help them. These people may feel very alone. They may be confused as to why doctors can’t tell them what is wrong. They may wonder if they don’t have a real disease or a disability at all.

Not finding a diagnosis happens a lot.

Most people do not know that some diseases have no name yet. Science and medical care are getting better every year. Still, there are many things scientists and doctors do not know. Scientists and doctors do not know every disease a person can have. Why is it some diseases or disabilities have no name?

How a Disease Gets a Name:

In the past, doctors named diseases for the problems they caused in the human body. If five babies were born with problems moving their legs, the doctor would say all five had the same leg disease. The name of the disease came from its symptoms.

Looking at Human Genes:

Today, some doctors still use old disease names from symptoms. But more doctors today want to know the true cause of a disease. To find a disease’s true cause, doctors look at our genes. Genes are inside our bodies. They tell the parts of our body how to work. We are born with our genes. We keep the same genes our whole lives. Scientists know that a problem in our genes will often cause a disease.

Finding a gene problem is the best way to name a disease.

Today, if five babies are born with leg problems, the doctor will test a little of their blood to see their genes. Even though all five babies have leg problems, they may not have the same gene problems. The babies will get different names for their diseases, if they have different gene problems.

When we can’t find a gene problem:

Sometimes, doctors cannot find the gene problem causing a person’s disease. This happens because humans still have a lot to learn about genes. We don’t know how to find every gene problem in the body. We don’t know why some gene problems cause diseases, and some gene problems do not.

When we can’t find a sick person’s gene problem, their disease has no name. A person with a disease that has no name is called undiagnosed. Today, many people with diseases and disabilities are undiagnosed. These people and their doctors are waiting for new tests to find their gene problems. They are waiting for scientists to learn more about their diseases.

Living With No Diagnosis

For a person with a disease that has no name, life can be hard. Insurance companies may not want to pay for the person’s care. Doctors in special clinics may turn the person away, until their disease has a name. Groups for people with disabilities and diseases may not let the person join. Undiagnosed people may end up feeling alone as they live with their disease.

Having no diagnosis can feel lonely or scary.

But, even without a name for a disability, people can find help. A special group of doctors and scientists work for the US government to study diseases that have no name. They work at the National Institute of Health (NIH). The NIH has a page with tips for people who are undiagnosed.

These can be found at: https://rarediseases.info.nih.gov/guides/pages/24/tips-for-the-undiagnosed

 Another pace for undiagnosed people is the organization SWAN. SWAN stands for Syndromes Without A Name. SWAN is a group for people who have no name for their disease or disability. They keep a website at: http://swanusa.org/

At the SWAN site people can share stories. People can find others who also have no name for their disease. They can find a place to be together and share their daily lives.

Working with each other, people with no name for their disease can find hope. They can work through their struggles, and support new medical research.

A cure for Down syndrome or a celebration of chromosomal diversity?

on and off toggle switch
An on/off switch for Down syndrome

(World Down Syndrome Day, March 21, 2014)

As some of you may know last summer, scientists at UMass Medical School made a big discovery. They learned that a naturally occurring X chromosome “off-switch” could neutralize the extra chromosome responsible for Trisomy 21, also known as Down syndrome.i

The approach used by Dr. Jeanne Lawrence was inspired by the natural process that silences one copy of the female mammals’ two sex-determining X chromosomes during embryonic development. To prevent females from overdosing on these X chromosome genes, evolution invented a genetic element whose job is to deactivate half of those X chromosomes. They remain in the genome, but are not functional – gene silencing helps maintain similar expression patterns of X chromosomes in females and males. The X-inactivation gene (XIST), a large non-coding RNA molecule which covers the surface of one of the X chromosomes of female mammals, permanently blocks the expression, or activity of the genes on the affected X chromosome.

Dr. Lawrence mimicked this natural process by inserting the XIST gene into the gene-rich core of the extra chromosome 21 in patient-derived adult stem cells. In these laboratory cells they found that the RNA from the inserted XIST gene induced modifications that silenced the genes of chromosome 21, returning gene expression to near normal levels, even when measured eight different ways.

Now while this has been hailed in the press as a “cure for Down syndrome”, we are still only at the testing stage and any application to human subjects is still years away.ii However this potential for “chromosomal therapy” has stirred up controversy in the Down syndrome community, not dissimilar to how the development of cochlear implants have impacted the deaf community.

At one end of the spectrum, we have folks saying, “why wouldn’t you want to fix your child?” In the current era of pre-natal testing, this may be a real treatment option one day, and might affect the abortion rates of pre-natally diagnosed pregnancies, which have been increasing with each new pre-natal test that comes onto the market. iii, iv

At the other end, most parents of children with Down syndrome don’t think their child needs “fixing” and wouldn’t change anything about them. In fact, some worry that attempting any kind of therapy, let alone chromosomal therapy, would affect their child’s personality, which they would not want to turn “off”.

Others say, only use gene-silencing therapy to combat the ill-effects of Down syndrome. But where do you draw the line? Sure, for the obvious health issues such as the heart, digestive, hearing and vision challenges (if these can be individually identified and isolated chromosomally – we “fix” these now post-natally), but what about cognitive impairment levels, which universally affect all individuals with Down syndrome? Who’s to say where cognitive impairment begins? An IQ of 65, 70, 75? Just this month, the Supreme Court decided to revisit a case involving the execution of criminals with “mental retardation”.v 12 years ago, they removed the death penalty for criminals with an intellectual disability but left the details of defining what constitutes intellectual disability to the states, resulting in a range of IQ being used to apply the law. And is IQ really the right measure anyway? I’d offer up EQ or Emotional Intelligence as an alternative – the last time I checked, my 9-year old son with Down syndrome had a higher EQ than most people I know.

This raises some ethical questions – with IVF allowing parents to chose what type of children they want (ranging from sex selection to avoiding certain undesirable genetic conditions such as Down syndrome), to pre-natal testing & selective abortion, can we as parents be trusted to exercise good judgement over our choice? Again, I ask – where do we draw the line? Technology is only going to get better and soon we’ll be able to test pre-natally for things like same-sex preference. I suspect the media coverage would be dramatically different if we discovered a pre-natal test for the “gay gene” or found a genetic “treatment” for homosexuality. The latter certainly wouldn’t be hailed as a “cure for homosexuality”.

Having three copies of our 21st chromosome is one of the most common spontaneous “alterations” in our attempts at reproduction and if this is a natural part of the human condition, shouldn’t we embrace this diversity, much as the way we celebrate our differences in gender, color, race, national origin, religion, and sexual orientation? Social resistance to genetic selection is emerging. Earlier this year, North Dakota became the first state in our nation to pass a law prohibiting abortion for sex selection or genetic abnormalities such as Down syndrome.vi In social media, concern over genetic racism is rising. While chromosomal therapy might very well be a treatment in our lifetime, many in the Down syndrome community would like to propose a movement to celebrate chromosomal diversity instead. How very fitting in celebration of World Down Syndrome Day!

i Jiang, J. et. al. (2013). “Translating dosage compensation to Trisomy 21”. Nature, 500, 296-302.
ii Aleccia, J. (2011). “Could it be a cure?” NBC News. https://www.nbcnews.com/health/could-it-be-cure-breakthrough-prompts-down-syndrome-soul-searching-6C10879213, accessed February 2, 2014.
iii  Egan, J.F., et. al. (2011). “Demographic differences in Down syndrome live births from 1989 to 2006”. Prenatal Diagnosis, 31, 389-394.
iv  Messina, J. (2013) “Reflections on Down syndrome”. Disability INDEX. https://www.disabilityinfo.org/blog/?p=3682 , accessed February 2, 2014.
v  Clark, M., “Supreme Court to Consider What Defines Intellectual Disability”. Disability Scoop. https://www.disabilityscoop.com/2013/12/10/supreme-court-intellectual/18959/ , accessed Feb 2, 2014.
vi  The Prenatal Non-Discrimination Act (PREDNA) was signed into law on March 26, 2013, details https://legiscan.com/ND/bill/1305/2013 , accessed February 2, 2014.

Reflections on Down Syndrome

Evan and Michaela, the Author's two children
Evan and Michaela, the Author’s two children

Since October is Down syndrome Awareness Month, I thought I would dig into some critical statistics in this community to understand what’s behind the numbers. Much has been said and written in the popular American press about the 90% plus termination (abortion) rate when a pregnancy receives a definitive pre-natal diagnosis of Down syndrome. Diverse sources from the New York Times to politicians Sarah Palin and Rick Santorum have used this statistic.

The 92% statistic actually comes from a systematic international study (Mansfield et. al.) of 10 individual studies conducted between 1980 and 1998.i Its sample of 5,035 patients only included 77 U.S. individuals drawn from three U.S. studies, all of which were conducted in the 1980s. So while technically correct globally, the U.S. sample is small and the study is not contemporary. Also this study showed great variation in termination rates not only amongst countries, but also across different regions of the U.S.

So while this 92% statistic is often referenced it may not be as applicable to the current U.S. population. A more recent review of 24 available U.S. studies conducted between 1995 and 2011, show this rate ranging from 50 – 90% depending upon the sample size and geographic location, again showing great variation across different regions in the U.S.ii However, even taking a simple average of the range, this means the majority of U.S. pregnancies that receive a definitive diagnosis of Down syndrome are terminated.

Note also that this statistic only applies to definitive tests for Down syndrome. Historically only 2-3% of pregnant women would chose chorionic villus sampling (CVS) or amniocentesis, the only definitive tests (99% accurate) for Down syndrome. These returned results generally only in the 2nd trimester and were expensive, invasive tests with risks of miscarriage. Thus, they were only recommended for pregnant women above the age 35, the threshold age where the likelihood of Down syndrome occurring is higher (1 in ~750 for all pregnancies; 1 in ~385 for pregnant women at 35 years of age). However in 2011 inexpensive, 1st trimester non-invasive prenatal screening (NIPS) tests became available. NowAmerican Congress of Obstetricians & Gynecologists  (ACOG) recommends screening for all pregnant women regardless of age. Sarah Cullen from the Massachusetts Down Syndrome Congress (MDSC) reports that since the introduction of , NIPS, their First Call Program has seen a 33% rise in the number of pre-natal (vs. post-natal) referrals.iii An increasing number of diagnoses are being delivered on a pre-natal basis and herein lies the problem….

History shows that when pre-natal tests are introduced, termination rates of pregnancies identified with the targeted anomaly increase.  Down syndrome is no exception.  25 years ago when amniocentesis was the only definitive test for Down syndrome, researchers calculated that there was about a 20% abortion rate (4,474 live births vs. 5,633 projected births based on maternal age in 1989).iv  Over the last 20 years, however, the abortion rate for pregnancies with a diagnosis of Down syndrome has skyrocketed.  In 2006, ~8,000 live births of babies with Down syndrome were projected in the U.S.  Yet only 3,989, babies with Down syndrome were born, implying an abortion rate of over 50%.

Now we do not know how many of the 3,989 women that had babies with Down syndrome received a post-natal diagnosis (either because they were not offered the test and were unaware that testing for Down syndrome is available, or they rejected the tests), or a pre-natal diagnosis (they received a positive pre-natal test result and made a decision to have a baby with Down syndrome). However, history repeats itself, given that there are now four companies offering NIPS tests and even more tests for Down syndrome in development, we can only expect an even greater increase in the abortion rate. Additionally, the recently passed Affordable Care Act is recommending universal screening for Down syndrome as “preventative care”. We see bias bleed into policy here since the only way to “prevent” Down syndrome is to terminate the pregnancy.

I live in Boston where the overwhelming majority of adults identify as “Pro Choice”. I would guess that some in this majority would be disconcerted by selective abortion of a planned baby. They might consider this an act of discrimination instead of an issue pertaining to reproductive rights. As we “advance” technologically with screening tests for more and more genetic conditions, aren’t we moving towards the elimination of certain sub-groups within our population?

Both my children are in the highest risk categories for being eliminated: a boy with Down syndrome and a girl of half-Chinese ancestry. In China and some Asian ethnic populations in the U.S., genetic testing is used to select for the sex of a child, leading to abortion when tests show positive for the undesirable XX chromosome. In most of the U.S., however 3×21 (3 copies of the 21st chromosome, or Down syndrome) is riskier for the child.

I find all of this troubling on many levels. While I myself am a Christian and believe in the value of all human life, I know many non-Christian parents of children with disabilities who espouse the view that no matter what the form or intellectual capacity, every individual has something of value to offer to the world. Though I was initially devastated with my son’s diagnosis of Down syndrome, I have learned to appreciate his many gifts. He has a joie de vie and a love for life that is unparalleled – an attitude towards life we could all learn from. He has taught me that “imperfection” is part of the human condition and this is what makes us human.

Which brings me to my last point: I wonder if our human genome is attempting to evolve to a better, higher more sophisticated form? Having three copies of our 21st chromosome is one of the most common spontaneous “alterations” in our attempts at reproduction. Dr. Dennis McGuire from the Adult Down Syndrome Center at Lutheran General Hospital in Park Ridge, Illinois posed the following provocative question: “What would happen if people with Down syndrome ruled the world?v Below is my Top 10 Summary, excerpted from his extensive list:

      1. Affection, hugging and caring for others would make a big comeback
      2. All people would be encouraged to develop and use their gifts to help others
      3. People would be refreshing honest and genuine
      4. People engaged in self-talk would be considered thoughtful and creative
      5. “The Rat Race” would not survive
      6. Work would be revered, no matter what kind, from doing the dishes to rocket science
      7. “Here and Now” (i.e. living in the present) would command a great deal more respect than it currently does
      8. Speed would be far less important than doing the job right
      9. Stopping to smell the roses would not just be a cliché
      10. People would not hurt the feelings of others. They also would not lie or keep secrets. Therefore there would probably be no secret service agents, spies, or terrorists

Given this, whose genome is actually more evolved?

I’d like to conclude by circling back to NIPS and what this means for us as a community. Virtually every couple that finds themselves pregnant will be offered a test for Down syndrome. This is seldom presented as optional, but it is. Instead of agreeing to be tested as part of routine pre-natal care, I challenge you to think about the purpose of such a test (and other such tests that you will no doubt encounter). Social resistance to pre-natal genetic selection is emerging. Earlier this year, North Dakota became the first state in our nation to pass a law prohibiting abortion for sex selection or genetic abnormalities such as Down syndrome.vi Perhaps there is a future for both my kids after all. And for the rest of us who have no immediate plans to become pregnant, I encourage you to meet with a family living with Down syndrome. You might be surprised how a short time spent could change the course of your life for the better.


i Mansfield et. al., “Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, Turner and Klinefelter syndromes: a systematic literature review”, European Concerted Action: DADA (Decision-making After the Diagnosis of a fetal Abnormality). Prenatal Diagnosis, 19 (1999)

ii Natoli et. al., “Prenatal diagnosis of Down syndrome: a systematic review of termination rates from 1995 – 2011”, Prenatal Diagnosis, 32 (2012)

iii In an interview with the author on October 23, 2013, Sarah Cullen reported 32 pre-natal referrals for fiscal year 2013, compared to 18 for 2011.

iv Egan et. al., “Demographic differences in Down syndrome live births from 1989 to 2006”, Prenatal Diagnosis, 31 (2011)

v McGuire, D., “If People with Down Syndrome Ruled the World”, online link accessed October 20, 2013, https://www.nads.org/pages_new/news/ruletheworld.html

vi The Prenatal Non-Discrimination Act (PREDNA) was signed into law on March 26, 2013, online link accessed October 20, 2013, https://legiscan.com/ND/bill/1305/2013

And the Blog goes on

With the changing of seasons, it is also time for change at INDEX. After three years as the Blog Editor, I will be leaving INDEX and moving on.

In the beginning

When first approached by INDEX to coordinate their new blog, I had no idea what a blog was; I had only heard the term. But since I loved to write, I thought it would be fun and maybe a new challenge. I was also encouraged by the staff at INDEX who were genuinely excited about the new venture.

I just never realized in the process how much I would learn.

The stories

There were the family members sharing their experiences of anguish and triumph. The community organizations addressing challenges with creativity and a commitment to change.

And most important, there were the people with disabilities themselves who inspired us with their personal stories. I may have worked in the field for over 30 years, yet I am still humbled by the perseverance and ability of those who truly make a difference.

With gratitude

To our guest bloggers and all those who were interviewed, my sincere appreciation. To the staff at INDEX who were such a pleasure to work with, you will be missed.

To you, the readers, thanks for listening.

Over the summer the Blog will go on hiatus with a new format introduced in the fall.

See you then.

Health Care Professionals and Students Volunteer at Health Screenings

The success of the Special Olympics(SO) is dependent on the volunteerism of thousands of people who donate their time and energy to coach, guide and advise the athletes. In addition, Health care professionals and students volunteer to ensure the success of the FUNfitness and Healthy Athletes programs.

Health care professionals share expertise

The Health care professionals conduct health screenings as an essential part of the FUNfitness program. Doctors, dentists, nurses, podiatrists, physical therapist, vision and hearing specialists all donate their time to insure that Health screenings are done in a professional manner.

Here in Massachusetts, our FUNfitness team includes Deirdra Murphy DPT, Clinical Director; Ed Kostek DPT, Clinical Instructor and Nancy Davis DPT who directs and implements the FUN fitness screenings.

Getting students involved

The committed team includes both seasoned professionals and students in these various health professions.

Deirdra is on the physical therapy faculty at UMass-Lowell, where her students have consistently participated. Ann Golub-Victor, DPT is on the faculty at Northeastern University(NU), recruiting many students from NU who are also key to our program.

Goals for the programs

The primary goal of FUNfitness is providing education and service to the Special Olympics athletes. The Healthy Athletes(HA) program has a key goal of increasing opportunities for people with Intellectual Disabilities(ID) to access needed health services. There are many barriers to these services including the attitude of health providers unfamiliar with the needs of people with ID or who have no previous experience with people with ID.

Through FUNfitness and other HA screenings, we create a fun and welcoming service where health professionals meet and interact while providing necessary service. . . And through this effort they come to the realization that their current and future practice can and should include people with ID and other developmental disabilities. As one student recently remarked, “I didn’t realize this would be so much fun.”

This is also our opportunity to educate health providers that people with ID have significant health problems previously unidentified, such as a high rate of balance difficulty and muscle tightness. The result is a better understanding of the need to address these concerns and that we all have a role in advocating for better health care for people with ID.

Learn more

To learn more about the FUNfitness Program,  other Healthy Athletes Programs or possibly becoming a volunteer, contact George Kent, george.kent@specialolympicsma.org ,at 508.485.0986 ex. 215.

About the author

Jim Gleason is an Associate Director of the Shriver Center University Center for Excellence in Developmental Disabilities (UCEDD) and a faculty member of the UMMS Shriver LEND Program.Jim Gleason


AJ Shares his Experience as a Mentee

Larry and AJ
Larry (mentor) and AJ (mentee)

This week I have the pleasure of introducing AJ, a mentee in the Partners for Youth with Disabilities (PYD) program. AJ described the program, his friend/mentor, Larry and why having a mentor made a difference in his life.

Introducing our mentee

AJ began the discussion by telling me a little about himself.

“I go to Campus Academy in Stoneham, am 18 years old and I live at home. School is going well and I would say someday I want to be a woodworker. I made a really nice coffee table for my Mom out of a piece of wood and liked doing it. I have had a mentor for about five years.”

What is a mentor?

I asked AJ how he would describe a mentor.

“A mentor is someone to talk to if you have any issues, but you can also have fun together. We go out to eat, go to bookstores, events and sometimes we go to Jordans in Reading. My mentor, Larry, lives nearby so he doesn’t have to travel far to see me.”

AJ was 14 years old when he first met Larry. He spoke of him fondly, describing a friendship that has grown over the past five years.

“Larry is my best friend. He would do anything for me and I would do anything for him.”

Yet AJ used the following qualities to describe Larry as not only a good friend, but a mentor that made an impact on his life.

“What’s important if you want to be a mentor? I would say you have to be a good listener and you need to have a good sense of humor. Larry does. We also both have disabilities, but that doesn’t really matter. We have the same interests.”

A mentee becomes a future mentor

I imagine AJ and Larry will continue their friendship in the years to come.

Yet it is also important to know that Larry has inspired AJ to give back to others. He described his plans for the future.

“I want to be a mentor myself someday, so I can help somebody the way Larry helped me.”

… And that is how a mentorship program can ultimately make a difference.

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?”

Resources for Making Websites Useable by People with Cognitive Disabilities

One does not have to be a web developer to help make a site usable by people with cognitive disabilities. Creating clear, simple website content is equally important.

What Are Cognitive Disabilities?

Cognitive disabilities are experienced by people, for example, who have dyslexia, or attention deficit disorder (ADD), or depression, and by all of us as we age. Cognitive disabilities are functionally characterized, in large part, by poor comprehension, attention and memory.

Within the United States, there are no widely-used and accepted definitions of cognitive disability. However, WebAIM has a functional definition of cognitive disabilities, which is good for web developers.

How Can a Website Be Made Usable by People with Cognitive Disabilities?

Using plain language throughout a site is a great start. There are five good design features and five good content features that would definitely make a website easier to use by people with cognitive disabilities. WebAIM has an informative article about evaluating cognitive web accessibility.

How Can a Website Be Determined Good for People with Cognitive Disabilities?

A terrific resource is WebAIM’s cognitive accessibility checklist, which is very useful for web developers.

I have been evaluating the cognitive accessibility of websites by organizations that serve people with cognitive disabilities. To date, I have found two of twenty sites to be accessible. For information about the methodology and the results of this work, see Cognitive Web Accessibility: Assessments.

There has also been research in this area. For a recent example, see Improving Web Searching for People with Cognitive Disabilities.

The best way to determine if a website is good for people with cognitive disabilities is to have them test it!

Additional Resources

Previous, Related Blog Posts

Note: Information about me and my work.