I recently had the opportunity to attend an update of the D5 Coalition work. Northern California Grantmakers hosted a variety of local grantmakers to learn more about the progress of the coalition with a particular emphasis on looking beyond typical definitions of diversity in order to include individuals from the LGBT community and those with disabilities. I was impressed with this concerted effort to promote a more inclusive mindset among funders, many who would gladly align themselves with this mission but have a harder time practically adopting these principles into their grantmaking efforts. In fact, while society as a whole has an increased level of sensitivity when it comes to gender and racial prejudice, there is less awareness of the prevalence of discrimination toward other groups. As the director of an organization that supports the causes of individuals with disabilities, I find this to be true more often than not.

In 2002 when my family decided to start a foundation, we agreed that we wanted to focus on an issue area that was under-funded. Disability met this criterion. Over 50 million Americans have at least one disability and yet grantmakers as a whole designate less than 5% of their funding to disability related programs/organizations. As I began to meet with nonprofit executives, I frequently heard, “I am so glad that we found you. Most foundations won’t fund disability.” Foundations are not only failing to respond to the need of this community, but they are excluding them from their funding programs. As agencies formed for the purpose of benefitting the public good, this is unconscionable. Individuals with disabilities are more likely to live below the poverty line, have more complex medical issues, and be under-educated and under-employed. I don’t believe that foundation directors don’t care; I believe that they don’t understand the need. Whenever I tell someone what I do, they inevitably tell me about a family member, close friend, or neighbor who has a disability. Disability-based issues are pervasive in our society but we just don’t talk about them. Given the opportunity to discuss these issues, I believe that foundation would find ways to purposefully and inclusively fund programs that target those with disabilities under their current grantmaking programs. Inclusion does not have to mean adding to our missions but fulfilling our missions by making sure that every group is reflected in our giving.

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A few years ago, my foundation made a high-risk grant that was far from “business-as-usual.” To convince and engage board members who only felt comfortable with the direct service grants making up most of our portfolio, I used landscape scanning to educate them—and myself!—about the potential of funding a software development effort that had the long-range potential to serve thousands of job-seekers with disabilities while also leveraging other foundation and government funding.

The grant also gave us the rare opportunity to demonstrate the agility of a small foundation to initiate improvements in a federal program that the government found it difficult to do itself because of bureaucratic limitations.

The Project and the Challenge

SmartWorks is a web-based client administration system that helps job-placement programs find employment for Social Security beneficiaries with disabilities. The goal—supporting nonprofits that help people with significant disabilities move from poverty and dependence on benefits to productive work and independence—fit our program guidelines perfectly. However, SmartWorks was connected to a government program, the Ticket to Work (TTW) Program, that was not only complicated but had a mixed history of success.

TTW provides payments from the Social Security Administration (SSA) to placement agencies that contract with SSA to serve beneficiaries; the agencies receive these payments when beneficiaries achieve employment milestones. However, TTW didn’t always work well. Because of cumbersome administrative requirements, placement agencies experienced frustration working with the system. That’s where SmartWorks came in, enabling agencies to easily conduct administrative tasks that previously hindered them from their goal of job placement.

When the SmartWorks proposal came across my desk, I had some general knowledge about TTW through another affinity group, the Disability Funders Network. To make a proper case to my board, however, I had to learn more about TTW and the need for a system like SmartWorks. I read up on TTW, and I talked to my grantees and others in the field. But I still had the problem of explaining it all to my board.

The explanation became clear while I was doing my taxes and realized that the difference between what a placement agency does to fulfill TTW’s administrative requirements with and without SmartWorks was like submitting taxes with and without tax-preparation software. The phrase, “SmartWorks is the Turbo-Tax® of the Ticket to Work business,” was the clincher that convinced my board.

It is this type of leverage that I would like to employ in our efforts to influence the health care arena. In order to see system-wide change, we will have to be strategic in our funding, targeting our limited resources for maximum impact. In my next post, I will talk about the impact of our grant on job placement agencies in 10 states and a government program—an impact that will ultimately affect thousands of people with disabilities.

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Thanks to Ted Tannenbaum of the Achievable Foundation for this guest blog entry.

When it comes to health care, most of us have an opinion about the current state of affairs. Our interaction with the healthcare system can either be an exploration into the marvels of modern medicine or result in sinking feelings of frustration over the lack of personal care, exploding bureaucracies and spiraling costs. Health care reform has been at the top of the nation’s agenda for the past few years. With one in every six dollars in the US spent on health care, not a day goes by that we can escape its influence. Questions and concerns abound for many people, but even more so our clients and their families. Will a doctor spend enough time with my loved one? Will they explain the treatment options in a clear and dignified way? Can we find a specialist who can work with us? Will it take months or longer to get an appointment?

 

People with developmental disabilities face additional barriers, such as a lack of specialists who will see them, hours-long waiting room times and providers who are ill-equipped to care for them. The health care system simply does not meet the needs and expectations of people with developmental disabilities. Linda, who both works as a consumer advocate and is a client at Westside Regional Center (WRC) in Los Angeles said, “Consumers can’t afford to pay for doctors, can’t pay for all the medicines, and can’t see dentists as fewer of them take Medi-Cal.”

 

Other adult clients at WRC also voiced their concerns about accessing quality healthcare. Robert lamented: “Even co-pays are going up, now sometimes $20 or $30 per visit, and many people can’t afford them.” Ted expressed the common perception of a lack of proper preventative care for this population: “I want to see a clinic that works to help with diabetes, how to treat it and prevent it too; it is something many clients here are dealing with.”

 

Not everyone realizes the magnitude of the issues that these and thousands of other clients face each day when trying to access healthcare providers to meet their needs Collaborations such as the one developing with the Achievable Foundation and Westside Regional Center are attempting to provide a place where health care needs can be addressed for our clients.


Whether it is a new community health center focusing on primary and specialty care or developing new data to better assess the health of medically under-served or vulnerable groups of people, it is vital that we continue to ask the right questions and seek the best answers that balance human needs with fiscal realities.

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“Our recovery plan will invest in electronic health records and new technology that will reduce errors, bring down costs, ensure privacy and save lives.” President Obama, Address to Joint Sessions of Congress, February 2009.

I grew up in the dark ages (per my kids) where I wrote all my school papers on a typewriter. Those were the days of carbon paper, correction tape, and changing ribbons – apologies to those who do not have a clue about what I am talking about. I first started learning about Word and Excel in 1995 and was thrilled with the ease of correcting errors, moving and inserting content, and organizing data. Hospitals were implementing bedside recording of vital signs and used computers for processing orders and charting. It was a whole new world. It was also the age of the emerging Internet and the possibilities were endless.

It is now 16 years later and my children’s pediatrician brings in an inch thick file to record their assessment and impressions at each visit. That file will have to be copied and mailed (maybe faxed) to a general practitioner when my kids graduate from their care. If the copy is not clear, or their handwriting is not good, there is an increased risk of error. What happened to the new world?

Electronic Health Records (EHR) seem like a no-brainer. Increased communication and decreased errors would appear to be a priority for any health care provider. However, despite state and federal incentives and successful examples of implementation, widespread adoption is slow. Utilization of EHR is even more crucial for individuals with  developmental disabilities. Since most primary care physicians have minimal training with and exposure to this population, clear and informative communication becomes that much more vital. If President Obama is serious about his commitment to EHR, he will have to provide adequate financial assistance both to develop integrated solutions and to help providers adopt this very valuable health care tool.

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Institutionalization has always had a negative connotation.  It evokes pictures of mistreated, neglected patients who are housed outside the public eye because of their inability to conform to social standards.  This image was particularly heartbreaking for parents who were overwhelmed by their children’s needs and behaviors but still deeply cared about their futures.  It was these brave and determined parents who insisted that there had to be a better way.  As a result of their outcry and some strategically placed policymakers, the standard of care shifted from an institution-based model to a community-based model.  In this new world, those with developmental disabilities could live, work, and recreate as a member of the community with an appropriate level of support and accommodation.  This idea was not only more cost-effective but was an ethical imperative.  Community-based agencies, most of them inspired and developed by parents, were created to meet individual needs and to promote independence.

Fast-forward to today.  The voice of the national champion is replaced with local and state leaders who have little knowledge or commitment to the previous reform movement and are constrained by a difficult economic climate.  Progressive system-wide improvements are at risk as state budget makers look for more “practical” solutions.  The net effect, a movement back toward an institutional model.  As those with disabilities enjoys the benefits of the advancement of health science, issues of aging and quality of life will have to be addressed.  Who will rise to represent this population in the effort to seek pragmatic solutions that do not compromise the ideological roots of deinstitutionalization?

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Our nation’s doctor, U.S. Surgeon General Regina Benjamin, spoke to the Developmental Disabilities Conference at UCSF on Thursday.  Her topic was Making a Difference through Prevention, highlighting how the President’s Health Care Act emphasizes preventative care.  She sited her supportive stance on the First Lady’s Let’s Move initiative, tackling the obesity epidemic in children.  She also referred to her recent Call-to-Action Initiative on Breastfeeding that underscores the preventative benefits not only to infants but also to their moms who decrease their chances of breast and other reproductive cancers.  She then went on to highlight some of her work to promote the Health Care Act.  The only problem was that she made little connection to the needs of those with developmental disabilities.

It’s true that she had a difficult topic to tackle.  Since little is known about the cause(s) of autism, there are no preventative measures.  The same is true of Down syndrome and many types of epilepsy.  In fact, the only thing she could have addressed is the prevention of high-risk pregnancies, a topic covered later in the conference by another speaker.  That presenter sited several sources as she identified obesity, older first-time mothers, and the increased use of Assistive Reproductive Technology (ART) as factors that increase the chances of a high-risk pregnancy and/or prematurity that can be associated with some developmental disabilities.

Dr. Benjamin’s presentation reflected the lack of connection the Health Care Act has to the issues associated with developmental disabilities.  While there are some indirect benefits, there are no direct provisions to enhance health care delivery for these special people.

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U.S. Surgeon General, Dr. Regina Benjamin, is confirmed to speak at the 10th annual Developmental Disabilities Conference sponsored by University of California, San Francisco (UCSF) on March 10th.  As the national spokesperson for health care in America, this is a unique opportunity to hear her address the needs of this population.  I will be interested to hear her views on health care reform and how it should impact those with developmental disabilities.  She could address the significant increase in autism over the last decade, the latest advancements in early screening for Down syndrome, or even inadequate insurance reimbursement.  However, I hope that with her background in community medicine and primary care, that she will focus on the people with the greatest need, those who have limited financial resources and support.

As a pioneer in Telemedicine, medical education and specialty health care made available to patients and clinicians in rural and medically under-served areas through a private telecommunications network, she has seen the power of integrating technology with modern medicine.  It is just this type of innovative problem solving that is essential to impact gaps in health care services for the special needs population.  While technology is frequently utilized in accommodation solutions, it is the medical profession itself that is in need of accommodations to better serve those with behavioral challenges, communication deficits, and complex acute and chronic medical issues that are often misdiagnosed due to a lack of knowledge about developmental disabilities.  I hope Dr. Benjamin has not lost sight of needs of those who are most vulnerable and the medical professionals who serve them.

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I don’t like New Year’s Resolutions.  Don’t get me wrong; I am a goal-setter extraordinaire.  But there is just something about this annual tradition of making a commitment to change, which nearly always ends in failure, that I avoid at all costs.

However, this year I am making the goal to focus on some of the issues that I have unearthed around the area of Developmental Health Care.  I want to share what I have learned and would be fascinated to hear comments about what is working (and not working) both here in the United States and internationally.  The following are some of the topics I hope to touch on in 2011:

  • Lack of primary care professionals entering the field as a whole
  • The use of medical professionals (as a part of a physician led team) to provide developmental primary care services
  • Inadequate insurance reimbursement for extended appointment times and services
  • Specialized care facilities vs. inclusive medical environments
  • Informed consent – How to determine if an adult with a developmental disability can self-advocate
  • Lack of medical support services for this population
  • Dwindling government funding – Who is responsible to pay for care?
  • And the like (please feel free to contribute suggestions for additional topics)

I appreciate the many encouraging comments I have received to date and hope to receive additional insight and information as I continue on this education journey.  I am by no means an expert but am looking to enhance my understanding in order to better advise my board as we allocate funding to this worthy cause.

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I have vivid memories of the holiday season from my childhood.  From the time the Sears Roebuck catalog arrived at our home, I scoured the toy section, looking for ideas for my Christmas list.  With pencil and paper in hand, I would print each item along with a detailed description so Santa would know exactly what I wanted.  Christmas Eve, the list was carefully taped to the fireplace next to my stocking and was wisely removed by Santa when he dropped off the toys.  “Wisely”, because …I never got most of what I asked for.

One year a camera was at the top of the list.  Sure enough, one was waiting for me the next morning.  After the initial excitement (and upon closer inspection), I realized that it was a creatively disguised water gun that squirted unsuspecting models.  For many years I requested a friend for my first Barbie but Santa believed that one Barbie at a time was enough, so Malibu Barbie did not show up until her predecessor had brain surgery so I could see what was really in her empty, little head.  Each year my list became a little shorter and increasingly more realistic.  I learned to edit my expectations in order to minimize my disappointment.  Eventually, both the lists and the dreams were replaced by a bar placed low enough to ensure success.

So how does one create a vision for health care reform that will meet the needs of individuals with developmentally disabilities?  Do you keep the bar low to guarantee that all your goals will be accomplished?  And what does that look like?  As a human being, I attempt to avoid pain whenever possible and disappointment is painful.  However, without big hopes and efforts, adults with autism, Down syndrome, cerebral palsy, epilepsy, and the like will continue to struggle to access a health care system that is ill-equipped to meet their special (and at times complicated) needs.  I’m looking for some dreamers who are willing to face the pain in order to realize improved health outcomes at all levels.

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I just finished another successful Thanksgiving holiday with my family, so please indulge me as I reflect on a few things for which I am thankful. I have spent the last few months scrutinizing health care provision for the developmentally disabled, which has shed a new light on that for which I take for granted.

  • I have a primary care doctor who knows my name, has my health history, is able to see me when I am sick and provides well care screening and assessment on an annual basis.
  • My doctor’s office has a comfortable, private waiting area with the policy that no patient should wait more than 15 minutes for their appointment.
  • I am a part of a healthcare system that has electronic records that are maintained and protected but are accessible to my specialists and the urgent care clinic.  I do not have to have records copied and sent – all communication (lab work, results, therapies, etc) are documented within that system.  I also have access to the system, both to learn information and to contact my doctors.
  • I have a husband who cares about my well being.  If I were ever to become incapacitated, he would advocate on my behalf to make sure that I was getting the best care possible.
  • I also have three children.  As I age, they too will be able speak on my behalf.  I have no idea which one will step up to be my primary healthcare advocate, but I am confident that I will not have to face more complex health issues alone.
  • I have health insurance that covers my needs and the needs of my family.  It does not pay for everything, but does keep my healthcare expenses down and would keep me financially solvent in the event of a catastrophic health crisis.

When I consider the need for healthcare reform, I do not think of my own situation and how it could improve.  I think about the hundreds of thousands of adults with developmental disabilities who do not experience any of the benefits that I listed above.  Because they are slighted by the current system and have inadequate support, their health is neglected until they reach the crisis stage.  Then they are left with no choice but to seek care from the local emergency room.  Medical personnel can not possibly meet their needs in this crowded and chaotic environment, and the financial burden is passed on to taxpayers.  This is a no-win situation for all; all the more reason to look for solutions that are both humane and cost-effective.  It could be so much better.

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