Many Americans have been following action in Congress on legislation designed to stimulate the economy. CHADD members, donors, and supporters have a variety of views on this legislation, reflecting viewpoints across the nation. CHADD has been actively engaged in this effort. Given the variety of opinions, I wanted to share our thinking and approach.
For over 21 years, CHADD’s volunteer citizen board of directors and volunteer citizen public policy committee have developed the organization’s public policy platform. The platform advocates proactive federal support of the health, education, employment, and related supports for those individuals affected by AD/HD who require such supports. Not every person with a diagnosis of AD/HD requires this level of support. CHADD also advocates for research on the causes and treatments of AD/HD as well as efforts to promote prevention and wellness.
CHADD did not initiate a national government economic stimulus program; the leadership of the United States did. Once Congressional leaders launched such an effort, CHADD joined our sister national associations to advocate for enhanced funding for
• special education services under the Individuals with Disabilities Education Act (IDEA);
• disability in the Centers for Disease Control and Prevention (CDC) Prevention and Wellness Fund;
• electronic medical records promotion to increase the likelihood of coordinated and integrated medical services; and
• increased Medicaid services at a time of significant job loss.
There are many other support and research programs important to people with AD/HD and related disorders contained in the legislation. Coalitions to which CHADD belongs have supported some of these other programs. The four above have been CHADD’s priorities for work.
Promoting jobs, preventing job loss, mechanisms to promote economic recovery and protection—these are big-picture legislative goals. If legislators act, our role is to advocate for supports helpful to those people with AD/HD and related disorders who need such supports.
Click here for details on the legislation.
Let us pray that the efforts undertaken by our leaders work for America.
Clarke
You can read this blog and others like it at the HealthCentral website.
Friday, February 13, 2009
Wednesday, January 21, 2009
Disability: Pride, Acceptance, Power
On Sunday night, my wife and I attended the first ever Disability Power and Pride Inaugural Ball. The organizers stated that about 1,000 people attended. Former U.S. Representative Tony Coelho, who lives with epilepsy and serves on the national board of directors of the Epilepsy Foundation of America, served as master of ceremonies. Leading members of the U.S. Congress came by and spoke. President-elect Obama sent a written letter of gratitude and greeting.
I went to celebrate the progress of the movement I started working with in 1971, and to chat with fellow “gray hairs” about our progress. But what was evident, as soon as we walked in the door, was that this is a youth movement. Walking the streets of DC to get to the ball, we saw that young people were everywhere—excited and full of enthusiasm. Folks at the ball, while excited, hopeful, and full of dignity and pride, were concerned with their underemployment or nonemployment.
As President-elect, Barack Obama typically included messages about inclusion of people with disabilities. His written message emphasized, "In my administration, we will address the shameful employment situation for persons with disabilities." My son, aged 18, will graduate high school this coming summer. We have great anxieties about his next steps, about the many obstacles in the transition, and ultimately about gainful employment down the road. In recent years, CHADD has made applications to agencies of the federal government and private foundations to constructively and directly assist families dealing with the transition from school to work. We have not been successful.
Finding the balance is a key. We know that highly intelligent and creative folks with AD/HD do well in life and employment, despite their challenges (the Ned Hallowell school of thought). We know the result of failure to provide structured support and accommodation (the data documentation of Russell Barkley). CHADD has featured both experts at our annual conferences. Our challenge—and the challenge facing federal public policymakers—is how to recognize and build on the strengths and capabilities of individuals with disabilities, while acknowledging and modifying policies that provide the supports and accommodations to promote independence, happiness, and success. We really need an "individualized" response, which does not exist.
As an example, the U.S. Congress is working on an economic stimulus initiative. The House legislation includes a Centers for Disease Control and Prevention (CDC) initiative to lay the foundation for job growth by dealing with chronic illness. CHADD and sister national organizations working with the CDC National Center on Birth Defects and Developmental Disabilities (NCBDDD) are trying to convince Congressional leaders to insert "disability and health" into these initiatives.
These are very challenging times. These are times of hope and opportunity. CHADD hopes we can continue to find the right balance between recognizing and building on capabilities while building the supports and accommodations people with disabilities need to be successful.
We will keep you informed.
Clarke
You can read this blog and others like it at the HealthCentral Web site.
I went to celebrate the progress of the movement I started working with in 1971, and to chat with fellow “gray hairs” about our progress. But what was evident, as soon as we walked in the door, was that this is a youth movement. Walking the streets of DC to get to the ball, we saw that young people were everywhere—excited and full of enthusiasm. Folks at the ball, while excited, hopeful, and full of dignity and pride, were concerned with their underemployment or nonemployment.
As President-elect, Barack Obama typically included messages about inclusion of people with disabilities. His written message emphasized, "In my administration, we will address the shameful employment situation for persons with disabilities." My son, aged 18, will graduate high school this coming summer. We have great anxieties about his next steps, about the many obstacles in the transition, and ultimately about gainful employment down the road. In recent years, CHADD has made applications to agencies of the federal government and private foundations to constructively and directly assist families dealing with the transition from school to work. We have not been successful.
Finding the balance is a key. We know that highly intelligent and creative folks with AD/HD do well in life and employment, despite their challenges (the Ned Hallowell school of thought). We know the result of failure to provide structured support and accommodation (the data documentation of Russell Barkley). CHADD has featured both experts at our annual conferences. Our challenge—and the challenge facing federal public policymakers—is how to recognize and build on the strengths and capabilities of individuals with disabilities, while acknowledging and modifying policies that provide the supports and accommodations to promote independence, happiness, and success. We really need an "individualized" response, which does not exist.
As an example, the U.S. Congress is working on an economic stimulus initiative. The House legislation includes a Centers for Disease Control and Prevention (CDC) initiative to lay the foundation for job growth by dealing with chronic illness. CHADD and sister national organizations working with the CDC National Center on Birth Defects and Developmental Disabilities (NCBDDD) are trying to convince Congressional leaders to insert "disability and health" into these initiatives.
These are very challenging times. These are times of hope and opportunity. CHADD hopes we can continue to find the right balance between recognizing and building on capabilities while building the supports and accommodations people with disabilities need to be successful.
We will keep you informed.
Clarke
You can read this blog and others like it at the HealthCentral Web site.
Wednesday, January 7, 2009
Living with a Child with a Disability
by Cynthia A. Smith, MS, CAS, JD
On December 16, 2008, I attended a press conference announcing the release of the findings from a research project titled Living with Autism. Although the study focused on children with autism spectrum disorders, I could not help but think a study on families of children with AD/HD or any disability that significantly impacts daily living activities might share some of the same findings.
I thought back to all the children with disabilities I worked with in high school and college, and to my own family experiences. As I listened to the results, I mentally checked off items of concern that I had heard from parents of children with disabilities over the years. The study confirmed for me what many family members and care providers have known for years: A child’s disability does not just change how we care for a particular child, it also affects the entire family because of physical and attitudinal barriers in society.
Harris Interactive surveyed 1,652 parents of children who have an autism spectrum disorder and 917 parents of children without disabilities. Parents were questioned regarding the ongoing challenges their families face in the areas of daily life, relationships, independence, education, housing, finances, employment, and healthcare, as well as how they view their child’s future. Some of the findings include:
More information about the study is available here.
Cynthia A. Smith, MS, CAS, JD, is CHADD's Public Policy Specialist.
You can read this blog and others like it at the HealthCentral Web site.
On December 16, 2008, I attended a press conference announcing the release of the findings from a research project titled Living with Autism. Although the study focused on children with autism spectrum disorders, I could not help but think a study on families of children with AD/HD or any disability that significantly impacts daily living activities might share some of the same findings.
I thought back to all the children with disabilities I worked with in high school and college, and to my own family experiences. As I listened to the results, I mentally checked off items of concern that I had heard from parents of children with disabilities over the years. The study confirmed for me what many family members and care providers have known for years: A child’s disability does not just change how we care for a particular child, it also affects the entire family because of physical and attitudinal barriers in society.
Harris Interactive surveyed 1,652 parents of children who have an autism spectrum disorder and 917 parents of children without disabilities. Parents were questioned regarding the ongoing challenges their families face in the areas of daily life, relationships, independence, education, housing, finances, employment, and healthcare, as well as how they view their child’s future. Some of the findings include:
- 14 percent of parents of children without disabilities think their child will be able to make their own life decisions, compared to 65 percent of parents of children with autism.
- 51 percent of parents of children without disabilities think their child will be able to have a spouse or life partner, compared to 9 percent of parents of children with autism.
- 60 percent of parents of children without disabilities are concerned about their child’s future employment, compared to 76 percent of parents of children with autism.
- 32 percent of parents of children without disabilities believe their child will be living at home beyond age 18, compared to 79 percent of parents of children with autism.
- 42 percent of parents of children without disabilities believe their child will have healthcare that adequately covers their needs, compared to 18 percent of parents of children with autism.
More information about the study is available here.
Cynthia A. Smith, MS, CAS, JD, is CHADD's Public Policy Specialist.
You can read this blog and others like it at the HealthCentral Web site.
Thursday, December 18, 2008
Organizing a Local Town Hall Meeting to Help the State Legislature
Last week my wife and I attended a town hall meeting in our county organized by three local disability family organizations. The Maryland state legislature convenes in mid-January, and this was an effort to educate both families and public officials at the same time and in the same place.
It was a successful event. Two members of the Maryland State House attended and stayed to listen to the stories. The county executive attended, listened, and was the last speaker. Staff members from the offices of four members of the Maryland legislature attended; one discussed her personal experience as a mother of a child with special needs. A member of the county school board, the county special education director, and several county agency staffers attended.
The meeting was held in a prominent and conveniently located church. Members of the three hosting organizations attended in good numbers. Family members received reminder telephone calls prior to the meeting, encouraging attendance. There were moving personal stories. The organizers served desserts and beverages. They had a printed agenda.
The organizers did not publicize to the community at large, so it was a speaking-to-the-choir experience. As with all CHADD chapters and support groups, the entire program was organized and presented by citizen-volunteers. The presentations frequently were disjointed and common themes (other than we need more money) frequently got lost in the presentation. Two speakers did not show. There was no content takeaway.
So, for anyone planning a local event, I suggest the following:
1. Collaborate with several organizations to co-host.
2. Assertively outreach to your members through personal contact.
3. Publicize the event to the community at large.
4. Select a neutral, prominent, and convenient location.
5. Tell people there will be food.
6. As public officials confirm their attendance, revise the publicity and outreach materials to indicate their attendance.
7. Coordinate, and then develop common themes and messages.
8. Prepare a one-page takeaway of common themes and messages with content that legislators and agency officials will understand and use in their work.
9. Timing is important. Holding an event the month before the legislature convenes is great—close enough, but not too close.
Good luck as you work to inform the public, and its governmental leaders, about AD/HD, related disorders, and the lived experience. Slowly, build a social movement from the neighborhood up.
Clarke
It was a successful event. Two members of the Maryland State House attended and stayed to listen to the stories. The county executive attended, listened, and was the last speaker. Staff members from the offices of four members of the Maryland legislature attended; one discussed her personal experience as a mother of a child with special needs. A member of the county school board, the county special education director, and several county agency staffers attended.
The meeting was held in a prominent and conveniently located church. Members of the three hosting organizations attended in good numbers. Family members received reminder telephone calls prior to the meeting, encouraging attendance. There were moving personal stories. The organizers served desserts and beverages. They had a printed agenda.
The organizers did not publicize to the community at large, so it was a speaking-to-the-choir experience. As with all CHADD chapters and support groups, the entire program was organized and presented by citizen-volunteers. The presentations frequently were disjointed and common themes (other than we need more money) frequently got lost in the presentation. Two speakers did not show. There was no content takeaway.
So, for anyone planning a local event, I suggest the following:
1. Collaborate with several organizations to co-host.
2. Assertively outreach to your members through personal contact.
3. Publicize the event to the community at large.
4. Select a neutral, prominent, and convenient location.
5. Tell people there will be food.
6. As public officials confirm their attendance, revise the publicity and outreach materials to indicate their attendance.
7. Coordinate, and then develop common themes and messages.
8. Prepare a one-page takeaway of common themes and messages with content that legislators and agency officials will understand and use in their work.
9. Timing is important. Holding an event the month before the legislature convenes is great—close enough, but not too close.
Good luck as you work to inform the public, and its governmental leaders, about AD/HD, related disorders, and the lived experience. Slowly, build a social movement from the neighborhood up.
Clarke
Wednesday, December 3, 2008
Think About a Special Needs Trust
Ever think about how you will provide for your child with special needs once you are no longer around? Over the Thanksgiving weekend, my wife and I established a special needs trust with our son Andrew, now age 18. I strongly encourage any family with a child who has significant special needs to consider establishing such a trust.
To effectively design and implement such a trust, you need an experienced attorney who specializes in such work. We located such a firm and attorney by word of mouth. We have information on possible legal resources to assist with such trusts on CHADD’s National Resource Center on AD/HD Web site; see Finding an Attorney and also the Other Web Sites section on the main Living with AD/HD page. And there is a national organization that is devoted to this subject, the Special Needs Alliance.
Our resources will go into a special trust, the sole purpose of which is to promote Andrew’s welfare. The trust needs flexibility as circumstances and eligibility and rules governing public assistance programs change. We don't know the circumstances Andrew will face. We don't know if public programs will be helpful or not. The only real concern we have is the need to have a dependable and knowledgeable trustee. Currently we have one—my wife's youngest sister. This is great for now, but Andrew has no brothers or sisters. At some point, health and aging may mean that we will have to find another trustee—younger, healthier, dependable, willing to make all decisions to promote Andrew's welfare, knowledgeable enough to be able to figure out (with legal or advocate assistance) the impact of public program rules and their interplay with the trust resources. This may be difficult.
While with our specialist attorney, Andrew decided that it would be reassuring to him to grant his parents limited power of attorney regarding health decisions and money decisions. Andrew may never need this assistance. But if a crisis occurs and Andrew needs our assistance, we are legally authorized to help. This requires a trusting relationship and careful, deliberate communication between the family members. Andrew and we feel more assured with this authority in place.
Good wishes as you plan your future.
Clarke
To effectively design and implement such a trust, you need an experienced attorney who specializes in such work. We located such a firm and attorney by word of mouth. We have information on possible legal resources to assist with such trusts on CHADD’s National Resource Center on AD/HD Web site; see Finding an Attorney and also the Other Web Sites section on the main Living with AD/HD page. And there is a national organization that is devoted to this subject, the Special Needs Alliance.
Our resources will go into a special trust, the sole purpose of which is to promote Andrew’s welfare. The trust needs flexibility as circumstances and eligibility and rules governing public assistance programs change. We don't know the circumstances Andrew will face. We don't know if public programs will be helpful or not. The only real concern we have is the need to have a dependable and knowledgeable trustee. Currently we have one—my wife's youngest sister. This is great for now, but Andrew has no brothers or sisters. At some point, health and aging may mean that we will have to find another trustee—younger, healthier, dependable, willing to make all decisions to promote Andrew's welfare, knowledgeable enough to be able to figure out (with legal or advocate assistance) the impact of public program rules and their interplay with the trust resources. This may be difficult.
While with our specialist attorney, Andrew decided that it would be reassuring to him to grant his parents limited power of attorney regarding health decisions and money decisions. Andrew may never need this assistance. But if a crisis occurs and Andrew needs our assistance, we are legally authorized to help. This requires a trusting relationship and careful, deliberate communication between the family members. Andrew and we feel more assured with this authority in place.
Good wishes as you plan your future.
Clarke
Thursday, November 20, 2008
Changing Public Policy Where You Live
CHADD recently collaborated with sister family advocacy organizations demonstrating that you, working with others, can change government policy where you live.
During the past eleven months CHADD has participated in a state public policy advocacy project in collaboration with the National Health Council (NHC). CHADD Pennsylvania, a collection of unpaid volunteers who initially met in January 2008 and officially organized in June 2008, was able to secure the introduction of legislation in both the Pennsylvania state senate and state assembly to allow part-time college students with disabilities to continue health insurance coverage under their parents' policies. Click here for details on the Pennsylvania legislation.
A 2007 National Health Council survey found that only one percent of those affected by chronic illnesses and disabilities are advocates on behalf of "patient advocacy organizations." An objective of NHC and CHADD is to increase citizen participation in governmental issues.
CHADD is one of fifty voluntary health agencies/patient advocacy organizations that belong to the National Health Council. "Voluntary" health agencies are those governed by non-compensated volunteer boards of directors. "Patient" advocacy organizations are those who advocate for a single illness, disability, and disorder. CHADD was one of four VHAs selected to receive staff technical assistance to influence state or local legislation. The other three were Alopecia Areata Foundation, Epilepsy Foundation, and Huntington's Disease Society.
The key to success in state and local public policy advocacy depends on four tasks:
Click here to read the entire NHC report, Grow Your Grassroots and Better Influence Public Policy: Strategic Advocacy Plan and Case Studies From the National Health Council.
Keep at it.
Clarke
During the past eleven months CHADD has participated in a state public policy advocacy project in collaboration with the National Health Council (NHC). CHADD Pennsylvania, a collection of unpaid volunteers who initially met in January 2008 and officially organized in June 2008, was able to secure the introduction of legislation in both the Pennsylvania state senate and state assembly to allow part-time college students with disabilities to continue health insurance coverage under their parents' policies. Click here for details on the Pennsylvania legislation.
A 2007 National Health Council survey found that only one percent of those affected by chronic illnesses and disabilities are advocates on behalf of "patient advocacy organizations." An objective of NHC and CHADD is to increase citizen participation in governmental issues.
CHADD is one of fifty voluntary health agencies/patient advocacy organizations that belong to the National Health Council. "Voluntary" health agencies are those governed by non-compensated volunteer boards of directors. "Patient" advocacy organizations are those who advocate for a single illness, disability, and disorder. CHADD was one of four VHAs selected to receive staff technical assistance to influence state or local legislation. The other three were Alopecia Areata Foundation, Epilepsy Foundation, and Huntington's Disease Society.
The key to success in state and local public policy advocacy depends on four tasks:
1. Break Down the Walls - Involve consumers and families in advocacy work; Create a work group.
2. Identify an Objective and Secure Resources - Organize and target resources to the objective.
3. Maximize "Inclusion" - Make noise - Develop strategies and tactics.
4. Stay Focused - Stay on message - Implement your targeted objective.
Click here to read the entire NHC report, Grow Your Grassroots and Better Influence Public Policy: Strategic Advocacy Plan and Case Studies From the National Health Council.
Keep at it.
Clarke
Thursday, October 30, 2008
Economic Self-Sufficiency
My son is now 18 years old and a senior in high school. We are struggling with what happens after high school—work preparation and self-sufficiency. One of the greatest impediments to our planning is that health insurance coverage is dependent on either full-time employment by a large employer or his being deemed by the government as “permanently and totally disabled.” For millions of young persons with special needs, they are neither. Cindy Smith, CHADD’s public policy specialist, attended a conference on this topic. Below is her summary.
This week I attended the Asset Development Summit for Persons with Disabilities and Their Families and launch of the Real Economic Incentive Tour for 2009. These events were sponsored by the National Disability Institute and other partners in Washington, DC. The development of personal assets is a topic I thought about frequently as I transitioned from school to work and back to school, and like many students made the decision to borrow the necessary funds to pay for my education. My experience has been remarkably similar and yet incredibly different from my peers with disabilities.
No one ever encouraged me to apply for public benefits, no one ever discouraged me from working. It was always assumed, barring some unforeseen circumstance, that I would finish school, find full-time employment, pay back my student loans, and begin slowly to save for my eventual retirement, and accumulate the funds needed to pay for my other life goals such as owning a house, taking a vacation, paying the living expenses of my children. Why is this not the same story for youth and adults with disabilities? Why is it that working-aged adults with disabilities are three times more likely than their working aged adults without disabilities to live at or below the poverty line?
The all-too-familiar story I have heard while answering the phones at legal services organizations was echoed at the Summit: the story of not going to work because of the fear of losing cash benefits, health insurance, and possible discrimination because of disability.
One of the Summit’s overarching goals was to increase awareness of a paradigm shift that is beginning—the shift from the belief that people with disabilities must live in poverty to the belief that people with disabilities can and should be able not only to lead economically self-sufficient lives by being able to work, but also to develop assets. Mechanisms are developing to allow this shift to occur—for example, the use of tax credits such as the Earned Income Tax Credit, the development of financial literacy programs such as America Saves, and the creation of waiver programs by Medicaid.
Tobey Davies, who directs the Center for Community Economic Development and Disability at Southern New Hampshire University, presented case studies that documented the ability of people with disabilities to use a combination of resources in order to meet their goals of buying a home or taking a vacation. The silos of progress have a long way to go before they are fully realized and our society becomes one in which people with disabilities can lead economically self-sufficient lives within their communities. Currently, over half of taxpayers with disabilities in the United States have incomes at or below $20,000 and an additional 27 percent have incomes under $40,000. Progress is slow but is starting to occur. Resources are available to assist people with disabilities in developing, retaining, and growing their assets. More information on this topic can be found here.
Cynthia A. Smith, MS, CAS, JD, is CHADD’s public policy specialist.
You can read this blog and others like it at the HealthCentral Web site.
This week I attended the Asset Development Summit for Persons with Disabilities and Their Families and launch of the Real Economic Incentive Tour for 2009. These events were sponsored by the National Disability Institute and other partners in Washington, DC. The development of personal assets is a topic I thought about frequently as I transitioned from school to work and back to school, and like many students made the decision to borrow the necessary funds to pay for my education. My experience has been remarkably similar and yet incredibly different from my peers with disabilities.
No one ever encouraged me to apply for public benefits, no one ever discouraged me from working. It was always assumed, barring some unforeseen circumstance, that I would finish school, find full-time employment, pay back my student loans, and begin slowly to save for my eventual retirement, and accumulate the funds needed to pay for my other life goals such as owning a house, taking a vacation, paying the living expenses of my children. Why is this not the same story for youth and adults with disabilities? Why is it that working-aged adults with disabilities are three times more likely than their working aged adults without disabilities to live at or below the poverty line?
The all-too-familiar story I have heard while answering the phones at legal services organizations was echoed at the Summit: the story of not going to work because of the fear of losing cash benefits, health insurance, and possible discrimination because of disability.
One of the Summit’s overarching goals was to increase awareness of a paradigm shift that is beginning—the shift from the belief that people with disabilities must live in poverty to the belief that people with disabilities can and should be able not only to lead economically self-sufficient lives by being able to work, but also to develop assets. Mechanisms are developing to allow this shift to occur—for example, the use of tax credits such as the Earned Income Tax Credit, the development of financial literacy programs such as America Saves, and the creation of waiver programs by Medicaid.
Tobey Davies, who directs the Center for Community Economic Development and Disability at Southern New Hampshire University, presented case studies that documented the ability of people with disabilities to use a combination of resources in order to meet their goals of buying a home or taking a vacation. The silos of progress have a long way to go before they are fully realized and our society becomes one in which people with disabilities can lead economically self-sufficient lives within their communities. Currently, over half of taxpayers with disabilities in the United States have incomes at or below $20,000 and an additional 27 percent have incomes under $40,000. Progress is slow but is starting to occur. Resources are available to assist people with disabilities in developing, retaining, and growing their assets. More information on this topic can be found here.
Cynthia A. Smith, MS, CAS, JD, is CHADD’s public policy specialist.
You can read this blog and others like it at the HealthCentral Web site.
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