Left Out in the Cold: Research Report
Health Care Project in the Media

Care for disabled criticized

By Matthew Kaplan - Daily News Tribune

Posted Nov 05, 2009

Citing a history of discrimination, advocates met at a forum Wednesday to address problems those with disabilities face in receiving adequate medical care.

"Our current health care system creates a hidden class, or hidden classes, of people," said Dennis Heaphy, a health analyst with the Disability Policy Consortium.

Often, he said, doctor and nurses provide "uninformed and prejudiced services that treat people as a disability," rather than as a person with a disability.

Heaphy joined with four other panelists at "Building Bridges to a Universally Designed Health Care System," a forum sponsored by advocacy group Health Care for All at the Boston Foundation, 75 Arlington St.

"When we looked at disabilities, we know that we haven't achieved the (health care) outcomes we wanted," said Amy Whitcomb Slemmer, Health Care for All's executive director.

Among the speakers at the forum attended by some 50 disability advocates, Amanda Nichols, health care policy director for the Waltham-based disability advocacy group the Arc of Massachusetts, said people with disabilities have been historically viewed as "deficient."

"There's a belief that people with disabilities are sick," she said. She and some advocates stated that the physical and intellectual disabilities people have are a part of who they are, rather than an illness.

Bill Henning, executive director of the Boston Center for Independent Living, blamed a lack of knowledge and sensitivity from health care providers when dealing with disability issues.

For example, he said, physically disabled women are less likely to get pap smears or mammograms than their peers.

According to a 2008 report from the Arc of Massachusetts that was distributed at the forum, it was found that health care professionals "lack knowledge about the specific health care needs of patients who do not reflect the 'typical' patient."

To counter these problems, Heaphy said doctors and other health care providers need to receive additional disability-specific training to have the sensitivity and know-how to properly treat disabled people.

Some health providers disagreed with some of the points made at the forum. Rachel Kagno, a spokeswoman for Newton-Wellesley Hospital, said in an e-mail that "it is our job to ensure that each patient feels they are being cared for appropriately." She said the hospital factors a person's background into care.

Stephen Shestakofsky, state legislation director of the Waltham-based Massachusetts Medical Society who attended the event, agreed that health care providers should have more education and sensitivity, but rejected the idea discussed at the forum that the Legislature should mandate such training.

But Shestakofsky said the society agreed with Health Care for All's support of efforts to provide greater state funding to health care providers who give care to disabled people.

Blue Cross Blue Shield of Massachusetts also supports such state payments, said Tara Murray, company public relations director. She said the initiative matches the health insurance provider's belief in paying for quality treatment.

But the calls for additional spending come at a time of severe state budget cuts. In the face of budget shortfalls, Gov. Deval Patrick slashed $8.3 million from the Department of Public Health, $10.3 million from the Department of Mental Health and $7.78 million from the Department of Developmental Services.

Georgia Maheras with Health Care for All said elderly people with disabilities incur monthly medical costs six to nine times higher than does the average person.

Despite the extra health care costs incurred by disabled people, Slemmer said "the (health care) system has to reflect the needs of everyone."


Carrie Barrepski: [The] Arc of Massachusetts and the Disability Policy Consortium to present health care findings on Oct. 29, 2009

Wednesday, October 14, 2009

At the Western Regional Department of Public Health in Northampton on Oct. 29, The Arc of Massachusetts and the Disability Policy Consortium will be reporting their health care research and findings along with their recommendations.

The event is being held from noon to 1:30 p.m. with a light lunch to be served. State Sens. Gale Candaras and Stanley Rosenberg, and state Reps. John Scibak and Christopher Donelan are sponsoring this project.

The focus of the research project was to determine what health care issues face those with intellectual and developmental disabilities. The findings cover a variety of subjects, ranging from knowledge to health care access.




In the category of knowledge, the research showed a lack of sufficient training and exposure on the part of health care officials, parents and guardians acting as educators and a lack of training among residential care workers dealing with health care.


Another area of concern was communication. They found that there was a lack of direct communication, language barriers and a lack of information on the part of health care workers.

The third area to be examined was the quality of health care provided. The research found insensitivity to the needs of those with intellectual and developmental disabilities, lengthy wait times at appointments and rushed appointments.

In the area of accessibility, they found problems with finding health care professionals. As a result, many people with intellectual and developmental disabilities were still seeing their childhood pediatricians.

The health care research project also found issues with insurance coverage, such as a shortage of health care professionals accepting public health insurance, a lack of adequate coverage and that many consumers lacked knowledge of the health care system.

The findings also showed the lack of a formal care coordinator to network health care professionals for people with disabilities.

After concluding the research, the project team made several recommendations. The first is to develop and put in place an educational program for health care professionals. They also suggest reducing reimbursement barriers for health care professionals and community support staff. The third is to improve access to high-quality health care. They also suggest developing and providing a formal care coordinator for adults with intellectual and developmental disabilities. The project team would also like to develop a training program for individuals with disabilities, their family members and community support staff. Last but not least, the project team feels that more research is needed in this area. For more information, call the ARC of Massachusetts at (781) 891-6270.

E-mail Carrie Barrepski atwww.carriewrites.net



Published by Center for Community Health Education, Research, and Service

See Page 3 for article: Health Disparities among Individuals with Intellectual and Developmental Disabilites

Posted July 2, 2009

Click Here for CCHERS Community Newsletter: Winter 2009


Heed discrimination laws in medical care of disabled


February 17, 2009


I READ with interest your Feb. 9 editorial "The disabled need doctors," concerning the difficulties encountered by people with disabilities trying to obtain quality primary medical care. You correctly praise the recommendations made in a report by the Arc of Massachusetts, including the proposal that specialized training concerning the needs of patients with disabilities should be made an integral part of all standard medical educations.


As the report notes, many medical internists avoid people with disabilities because of their uneasiness with such patients, and because such patients sometimes may pose challenges during routine medical visits. What needs to be recognized, however, is that however uneasy a doctor may feel in providing the care, that doctor's refusal to provide quality medical treatment to a person with a disability is a violation of both federal and Massachusetts disability discrimination laws.

As the Arc report correctly points out, many healthcare professionals are often "not sensitized to this population." While additional training as to the special needs of patients with disabilities would be most welcome, what also needs to be made clear to such medical professionals is that any discrimination against patients with disabilities will not be tolerated or ignored.

We must all address the continuing and widespread occurrence of medical discrimination against people with disabilities, and better training of healthcare professionals to combat such discrimination would be a great start.

Robert A. Whitney

The writer is president and chairman of the Board of Directors of the Massachusetts Disability Law Center.


The disabled need doctors

February 9, 2009

IT IS difficult enough to find a primary care doctor these days. Imagine how much harder it is for parents or guardians seeking treatment for young adults who are intellectually or developmentally disabled. Many are still seeing pediatricians at an age when they should be getting care from internists. Since treating the disabled can often require extra training and time, Medicaid and private insurers should provide higher reimbursements for such cases. And since care of the disabled has now largely moved from specialized hospitals to group homes and family homes, specialized training should be part of standard medical education.

These are the sound recommendations in a report released last week by The Arc of Massachusetts, an advocacy group for people with intellectual and developmental disabilities. The report lays out the problems in shifting the disabled to doctors with greater experience with adult conditions, such as high blood pressure or diabetes. Too often, care from internists or family practitioners is delayed, causing conditions to worsen. For some specialties, such as dentistry, it is hard for parents or guardians to find doctors who will accept Medicaid.

Limited access is just one of the problems pinpointed by the report, which was funded by the Boston Foundation. Researchers also see a need for better training of residential staff workers in group homes, who often have difficulty filling out health forms and recognizing when changes in residents are symptoms of health problems. Inadequate training, the report said, "led to erroneous or poor care of patients." The report also cites the hurdle of limited English language ability among residential staff.

Researchers found that once the disabled do find doctors, the quality of care varies widely. Doctors would sometimes do exams on patients in their wheelchairs, not lying down on the examining table. Frequently, doctors made no attempt to communicate directly with the patient. In general, parents and guardians said, healthcare professionals are often "not sensitized to this population."

Other problems mentioned in the report - from extended waits in the doctor's office, to high insurance copays and out-of-pocket costs, to lack of coordination - confront everyone, not just the disabled. But the challenges are only heightened for the disabled and their caretakers.

The picture is not all gloomy. The executive director of Arc, Leo Sarkissian, said Friday, "There are some successes where doctors do figure out how to do the funding and the coordination." Better reimbursements and training of healthcare professionals and group home staff could ensure there are even more success stories.


Seeking grown-up care

MDs' unease found to leave many disabled adults with pediatricians

Dr. Dan Palant, a pediatrician in Lexington, still treats longtime patient Shalom Lowell, who is 26 and has Down syndrome. (Globe Staff Photo / Joanne Rathe)

By Patricia Wen

Globe Staff / February 2, 2009

LEXINGTON - One day last week, Dr. Daniel Palant walked into his pediatric clinic, decorated with Mickey Mouse posters and antique baby bottles. He was prepared to see his next patient, whom he has known since birth: Shalom Lowell, who has Down syndrome. Palant loves meeting the same patients year after year, but he thinks that sometime soon this one should see a new doctor.

Lowell is now 26 years old and his body stretches well beyond the length of the examining table.

"It's best for him to see an internist," said Palant, after examining the young man, who has had recent bouts of fatigue. "He shouldn't be part of a pediatric practice."

The incidence of adult disabled patients staying with their pediatricians long after their 18th birthday is one of many issues raised in a report released today by The Arc of Massachusetts, an advocacy group for people with intellectual and developmental disabilities.

The study, "Left Out in the Cold: Health Care Experiences of Adults with Intellectual and Developmental Disabilities in Massachusetts," found that many disabled adults face longer waits than most people finding good internists, and that prevents them from getting the best care for common adult conditions such as hypertension, heart disease, or thyroid disorders.

The report found that, among other reasons, many internists avoid disabled patients because of uneasiness with them.

Also, many doctors feel that insurers do not pay enough to compensate them for the longer time it often takes to listen to - and care for - these patients.

Leo Sarkissian, executive director of Arc, acknowledged that many disabled adults pose special challenges during routine visits.

Some talk slowly or unclearly about what ails them, and others panic at being touched, even needing to be restrained for a routine throat culture or ear exam.

Some disabled adults may have physical limitations in simply getting up to the examining table.

"Doctors avoid them," Sarkissian said.

Della Jones, a Brockton mother, said her 18-year-old daughter, who has autism, will often "scream and push" during exams because of fears over the procedures, and Jones believes that is partly why she has yet to secure a good primary care doctor.

As a result, many pediatricians, who typically have more training involving disabilities, see their patients well into adulthood - some as old as 40, said Mandy Nichols, director of healthcare policy for Arc.

The report included interviews with more than 100 adults with disabilities, their parents or guardians, and community support professionals.

Two dozen physicians and other healthcare clinicians also took part in the study, funded by the Boston Foundation.

Nichols said there are no available statistics showing how many of the state's 180,000 disabled citizens see pediatricians as adults.

The report recommends that the state call for added training for doctors to become more sensitive to the needs of disabled adults.

Sarkissian said many doctors, if given the choice, talk directly to a parent or guardian about a disabled adult's medical problems, even when the disabled patient is in the examining room and able to understand. The report also calls for the state to increase insurance reimbursements to doctors who see adult patients with disabilities, accounting for the extra time and training.

Palant said he has long taken an interest in serving the disabled population because his older sister is developmentally disabled, and he has helped oversee her care for years. His pediatric practice has about a dozen adult patients with disabilities.

On Thursday, Palant listened as Lowell explained haltingly, but clearly, that he will often "fall asleep right after work," something that didn't happen before.

After Palant questioned Lowell about his sleeping and eating habits, the patient admitted that he sometimes has an erratic meal schedule and goes to bed late while living in his group home.

He vowed to get on a better schedule to boost his energy.

The session, which included a physical exam that prompted Lowell at times to break into fits of giggles, lasted about an hour.

Asked how much longer he plans to see Lowell, the pediatrician said he feels tremendous loyalty to the young man and his family.

"I play it by ear," he said.

Patricia Wen can be reached at wen@globe.com



Project tackles health care issues

Wednesday, August 13, 2008

I recently met with Mandy Nichols, director of health care policy for The Arc of Massachusetts. She spoke about a new project she is overseeing to improve health care access for individuals with intellectual and developmental disabilities. As part of the initiative, the project also seeks to improve the quality of care and make resources attainable for everybody. Funding for the project is coming from the Boston Foundation and Community Foundation of Western Massachusetts.

The first step was to gather information from the community about health care and personal experiences in order to understand what changes are needed to make the necessary improvements. Arc sponsored 10 focus groups across the state, including Springfield, which was hosted by the Multi-Cultural Community Services. The focus groups consisted of self-advocates, parents, guardians and long-term support professionals.

One of the major findings of the focus groups was the issue of communication barriers. For example, people whose primary language is not English had difficulty communicating with health care providers. This also applies to non-vocal individuals or people who communicate through sign language.

Nichols said another significant issue was the difficulty of receiving quality health care due to what she described as "a complex maze of finding quality health care."  The self-advocates brought up the issues of lack of direct communication as well as the assumption that they could not communicate for themselves or understand the issues.

Along with the focus groups, 26 interviews were conducted with medical personnel, state legislators and insurance providers. With 84 online surveys completed by those who could not attend the focus groups, the project team completed its research.

The team is in the final process of writing a report that will be shared through community meetings and the media. After gathering support and gaining key allies, the team will be ready to make suggestions and plans to resolve the issues uncovered by their research.

Nichols' research brought up many issues that people with disabilities deal with every day, including health care and other parts of their lives, such as dealing with stigmas, communication barriers and the lack of resources.

It will take a collaborative effort to change policies and to improve health care for all.

Carrie Barrepski, a native of Livonia, Mich., lives in Western Massachusetts.  You can learn more about Carrie at her Web site, www.carriewrites.net. She can be reached at cbarrepski@carriewrites.net