Parents of Kids and Adults with Special Needs

End Waiting Lists for Services for People with Developmental Disabilities

2009-05-21T13:09:00.001-07:00

A petition to the President to end waiting lists for services people with developmental disabilities has been posted on the Change.org site. Please sign the petition and pass it on:
http://www.change.org/ideas/view/fully_fund_medicaid_waivers_for_the_developmentally_disabled

If you are inclined to help get the thousands of signatures we are trying to get, please post the petition on your blog, Myspace, and Facebook. Also, join Twitter and tweet daily about the petition. Find others to connect with on Twitter who can retweet the message as well. Twitter is easy to use.

Let's all help to get the word out on this extremely important cause.

Missing Person Update

2009-05-21T13:06:00.000-07:00

I am sad to say that the missing person case of Jason Holley has been solved in the most terrifying way imaginable. Jason's body has been found. He was murdered by two young men for his Xbox. The young men have been arrested.

Go to www.findjasonholley.com to learn what you can do for his family.

New Conferences & Medical Research Added

2009-03-27T16:07:00.001-07:00

Today, we have added many new conferences, workshops, and news about medical research to our message boards. You can view them by clicking on the message board lists to the right.

"Special" vs. Equal

2009-03-20T10:05:00.000-07:00

My 26 year old son counts his life achievements thus far in a way that most people do; his greatest achievements are the days when he felt the warm glow of recognition for a job well done. On his list are the day he walked at two years old, the award he received in fifth grade for his essay in the D.A.R.E. program, when he walked with his high school class at graduation at age 19, the day he received his full diploma at 21, the first time he voted in the Presidential Election, and his medals in track and field and a gold medal in bowling from Special Olympics.

President Obama’s faux pas on the Jay Leno show concerning Special Olympics belies an underlying attitude of society that “special” in this case means “less than” rather than equal. The apology to the Special Olympics organization is appreciated by those of us who support and participate in the organization. The fact that he realized his comment would humiliate the athletes of Special Olympics is true. Unfortunately, his comment is not unusual in this country, where Special Olympics is right now launching a campaign to eliminate the “R” word from our vocabulary. That they must even conduct the campaign to stop people from using a term that has become an extremely common adjective to substitute for “stupid,” tells us all that our society has a long way to go to realize that “special” is not considered equal.

This attitude impacts public policy to a very large extent. In America today there are hundreds of thousands of people with developmental disabilities on waiting lists for services that will provide them with equal footing to live free lives included in our communities. While bailouts abound for financial institutions, and there was a call for the administration to fully fund Medicaid waivers as part of the bailout, action was not taken to do so. States are slashing more funding to these programs because of the lack of revenue. During the last election, Colorado’s Amendment 51, which would have created a small tax to end Colorado’s decades-long waiting lists, failed to pass. Voters weighed in through newspaper commentary saying that this was a “special interest” group, and that charities should be providing these “special” services. Some go as far as to say these services are “welfare.” Sarah Palin even weighed in against Amendment 51 to help the public feel better about their decision.

It is true, Special Olympic basketball players are not allowed in the NBA or even allowed to play high school basketball. Special Olympics exists to fill a huge void in a society that still does not consider people with disabilities as equals. But it is time for America, starting with our President, to realize that the day we consider the accomplishments of a person with a disability, who might have a lower score in a game, to be equal to someone with a full range of physical and intellectual abilities who scores higher, is the day when “special” no longer means “less than.” My hope is that President Obama, who had my son’s vote, will hear these words and act now.

End the "R" Word

2009-03-18T08:38:00.000-07:00

Recently, as I walked through downtown Denver enjoying an evening out with my husband, we were surrounded by people having fun. They were all kinds of groups, young and older, just chatting away. During the period of about an hour, I heard the word "retard" at least three times.

Everyone uses it, you say? It's just a word, right? A word that used to mean one thing, and now means something else? You don't mean anything by it, right? "I was just kidding!"

Do you have any idea how many times people with developmental disabilities are called the "R" word - in a way that is meant to be derogatory? And now, this word has become an adjective used as much as any other negative word to describe a person.

Face it - the "R" word is the equivalent of the "N" word. While it may have been somehow "acceptable" ions ago, it is now a slur. And the use of the word in any sentence is wrong - by anyone - any time.

That is why, when Dick Morris said the "R" word on the O'Reilly Factor on February 9, people with intellectual disabilities and the actor John C. McGinley from Scrubs, developed a video and a campaign to end the "R" word. They are seeking our help to end the use of the "R" word by spreading the word.

Watch the videos which I have posted here on the blog (right column). Send messages to all of your friends. Tweet a message with a link to the video. Add this same information to your blog. Put links to the videos on your Facebook and Myspace pages. And by all means, the next time you hear the "R" word, please tell the person who said it that the word is not acceptable.

This is an excellent article from the LA Times about this subject:
The 'R-word' is no joke

For the intellectually disabled and their families, it's just as bad as the "N"-word.

You can now also take a pledge to stop using the word. I've added a link to that page on the right.

Missing At-Risk Person, Colorado Springs, CO

2009-01-12T12:01:00.000-08:00

Readers,
My husband and I know this family. This is not one of those email scams. Please help find Jason.

At Risk: Missing since Jan. 5, 2009 from Colorado Springs CO

JASON HOLLEY age 22

Mentally Handicapped, 22 year old male with Klinefelter Syndrome.

Jason is shy, mild mannered, and somewhat immature with a slight hand tremor. He may be wearing a white hoodie with a print of broken money pieces and likely has a black backpack
and a cell phone with him.

Height: 6 feet 6 inches
Weight: 175 pounds, thin tall build.
Eyes: Blue
Hair: Light brownish red and wavy
Teeth: Straight

Contact the Colorado Springs Police Dept. at 719-444-7000 or 626-244-3674 if you have any information concerning Jason.

Watch the KKTV News Story

Update: March 18, 2009
For those who have inquired, Jason has not been found. A website has been developed for him at: www.findjasonholley.com.

We Did it! Unite for Change for the Next Round!

2009-01-01T13:11:00.000-08:00

I am thrilled to report that my Idea for Change to Fully Fund the Medicaid Waiver Program and create portability of waivers has made it to the next round of voting on Change.org.

We placed 16th out of 7,783 ideas - and did it even though we started later than most of the other ideas. You can see here where we are.

But we have a NEXT round of voting to prove that Funding Medicaid Waivers is one of the top 10 Ideas for Change in America. And we need to unite to get the word out to VOTE beginning January 5. Voting will end on January 15 so that is not much time.

Now I am going to ask everyone to start preparing for round 2. Build your circle of contacts so that you can send messages to hundreds of people at a time to vote. We are probably going to need to get at least 2500 votes to place in the top 10 - maybe even more than that. But there are 300,000 families on waiting lists in America so we should be able to do it, right?

Here is what is at stake for us:

On January 16th, Change.org will co-host an event at the National Press Club in Washington, DC to announce the top 10 rated ideas and our plans for supporting the formation of a national advocacy campaign behind each idea in collaboration with our nonprofit partners. The top 10 ideas will also be presented to President Obama on inauguration day.

Here's what you can do:

Individuals can:
1. Join a NEW internet support group (or more!). Start with:
Parent to Parent - http://www.p2pusa.org/
Yahoo Groups - http://yahoogroups.com - search for the largest groups you can find and join them. Make sure some are disability related but also join some general interest group. Start participating in the group NOW, so that you can feel comfortable sending a message about voting later.
Moms Like Me - http://www.momslikeme.com
2. Do some Google research to locate groups and organizations that will be interested in voting. Find contacts (preference is by name) and prepare to send them a personal email about what is happening.
3. Contact your local newspaper and tell them about waiting lists and our national Change effort. Point them to the site to read the stories from all over the country.
4. Think about your circle of influence - clubs, church, Linked-in, Myspace, Facebook, PTCO, coworkers, networking groups. Do you have email addresses - or can you get them? Write your own letter to the editor and make sure to include how to vote.
5. Friends and family - who do they know? Start asking now!
6. Do you belong to the national organization associated with your child's condition? If not, join now!

Organizations Can:
1. Get prepared to send out mass emails to your membership.
2. Contact all service providers you know.
3. Contact associations.
4. Contact your national organization if you have one.
5. Contact newspapers. Do press releases and letters to the editor.
6. Post the widget for voting on your web site, blogs, Myspace, Facebooks.
7. Find other contacts in other states and reach out to them.
8. Contact the Chamber of Commerce you belong to and ask for their help.

I will be posting sample messages you can send to people once I have all the info from Change.org.

We can do this!

Ending Waiting Lists Has Made it to the Top 3 Ideas

2008-12-30T10:16:00.000-08:00

The idea I posted on Ideas for Change at Change.org to Fully Fund the Medicaid Waiver program and to make waivers portable has made it to the top 3 ideas under health care on Change.org. Voting on the first round will end December 31 at midnight - so please do not stop voting because we could lose our place if others obtain more votes.

It does not end here and we need to mobilize in a very big way to make it to the top 10 ideas for America.

Beginning January 5, there will be another round of voting which will end on January 15. During that round, this idea will compete against all other top ideas in all categories until Ideas for Change has 10 top ideas for America to present to the Obama Administration on inauguration day. Some of the other ideas have had many more votes than ours - so every person and organization interested in ending waiting lists and creating portability will need to help reach thousands of people. Please plan on helping in every way you can.

Info about Ideas for Change and what this means for us:

Ideas for Change in America is a project of Change.org, an online community and media network for social issues, in partnership with more than three dozen leading organizations, including MySpace, techPresident, the Sunlight Foundation, Netroots Nation, Declare Yourself, Student PIRGs, Voto Latino, HeadCount, and Change Congress. We will launch a national campaign behind each of the top 10 ideas and mobilize the collective energy of the millions of members of Change.org, MySpace, and partner organizations to ensure that each winning idea gets the full consideration of the Obama Administration and Members of Congress.

Action Items:
1. From now until the next round of voting, please compile a list of contacts you can reach by email.
2. Join as many Internet support groups as possible and participate in them so that you can post a message to vote on that group. If you go to my main site (linked at the top of the blog) and go to support groups, you can find some there. You can also go to www.yahoogroups.com and find a new group.
3. If you are an organization with a membership base, be ready to send several messages to your members to mobilize them into action.
4. Work on your state: find as many organizations who would be interested in this issue as possible. (Just do a google search). Find people to contact at that organization and send a personalized message about the effort and ask them to do all of these action items as well.
5. If you are really interested and ambitious - find groups in other states to contact.
6. If you are an organization, send out press releases.
7. Put a widget on your Myspace, Facebook, Web site, Blog.
8. If you are an organization, contact your national umbrella org and use every networking method you have to get the word out.
9. Add me to your friends on the Change.org site.

I would very much like to know what you have done to promote this idea for change in America. You can contact me at the email address for this blog or at amazonb@att.net. Either one is fine.

LET'S DO IT. LET'S CHANGE THE PLAYING FIELD FOR KIDS WITH DISABILITIES AND THEIR FAMILIES.

End Waiting Lists

2008-12-15T12:32:00.000-08:00

Today, I have added a link to vote on Change.org's site on the extremely important issue of ending waiting lists for people with developmental disabilities. The link is on the right. Please vote today to help us to get the issue to the top of the health care issues addressed by the Obama team.

Update: I understand some of you are having trouble with the voting widget on the right. So if you want to vote to end the waiting lists, click here:

Vote Now!

Thursday, December 18 update:
I have written to countless people asking them to do more to get more votes to End Waiting Lists. I thought I would share some email text that you can send and ideas on how to help do more:

A mom of an adult with a developmental disability in Colorado has created an idea on Change.org to End Waiting Lists for people with developmental disabilities. We need many votes by December 31 to make it to the next round with the very real possibility of the idea being presented to President-Elect Obama on Innaguration Day. After the first round, there will be another round if we have made it to the top of the list. We have already made it to 9th place as of Thursday, December 18 in the Health category of thousands of other ideas because of the first wave of outreach that has already been done on this issue. The power of the Internet is AMAZING and now I ask you - please- to help.

Vote to Fully Fund the Medicaid Waiver Program to End Waiting Lists

There a several ways to get to the voting page and you can choose whatever works for you.

Go Directly:

http://www.change.org/ideas/view/fully_fund_medicaid_waivers_for_the_developmentally_disabled

From NOWAIT's web site

www.noewait.net

(If you are going to tell friends and family who don't know what waiting lists are, this is a good site to send them to)

Or from Renee's blog http://1specialplace.blogspot.com

Next, I am going to ask every parent who reads this email nationwide to take 15 minutes, 1 hour, 8 hours or whatever time you can spare for this very important effort to do whatever you can on this list of ideas to promote this campaign:

1. Send an email to every listserv you belong to, every friend on your email list, every support group you belong to, your case manager, your teachers, your local Arc, your fellow church-goers, EVERYONE you can think of - urging them to vote and post their comments.

2. Watch the site to see if we make it to the next round and then send another blast to everyone to get them back there.

3. Post a widget (available on the voting page itself) on your blog, Myspace, Facebook page or web site.

4. Spend a few minutes googling to find support groups you don't already know and ask them to do what I am asking you to do.

5. Join a NEW Internet support group and send this message there, too.

6. Join groups like Momslikeme.com and post it there.

Anything else you can think of......

Thanks,
Renee

Making Friends is Hard to Do

2008-12-12T14:24:00.000-08:00

Parents of kids and adults with special needs know how difficult it is for our children to make friends. It is one of the most heart-breaking parts about watching your child grow and one of the most difficult to help our children overcome.

Author and special educator Rick Lavoie recently conducted a workshop to teach educators, PTA members and others just what it is like. He offered understanding, hope, and solutions as well.

Read more about what he did

The examples he used helped those who participated in the workshop to really experience what it must be like.

There are other resources that can also help you to help your child. First, make sure you are in contact with your local Arc and the Parent Training Information Center for your area. Both organizations sometimes offer workshops related to making friends.

A few other resources include:
Snapshots - Making Friends - produced by the FPG Child Development Institute at UNC Chapel
Hill.

An article from About.com : Top 6 Tips to Teach Social Skills and Help Kids Make Friends

A paper called Making Friends: Using Recreation Activities To Promote Friendship between Children with and without Disabilities.

Information from a study that was done on the subject.

It is also important to continue to educate everyone around you about what you are experiencing. Sometimes, the grief parents feel inside as we watch our children try to navigate the social world can cause us to be biased about what we believe is happening. There are many times when your child actually is having a good time and relating to friends when you don't know it.

News from One Special Blog: Job Posted

2008-12-10T14:05:00.000-08:00

When I designed this blog and accompanying web site, I also included a number of message boards to help parents with many different things. One of those things is jobs for parents that have flexible hours. This is an area that is going to require that I put some time into finding companies who have the right kinds of jobs for parents who may need a great deal of flexibility. So they will not come fast and there likely will not be hundreds of them.

But today, the first job in our job resource message board has been posted!

If you know of a company or organization that may be interested in posting jobs on our message board, please have them contact me at oneblog@commulinks.com. They can be anywhere in the country. But, they need to be legitimate. We won't post pyramid schemes or crazy work at home scams. Nonprofit organizations get free postings. There is a fee for companies.

News from One Special Blog

2008-12-09T16:10:00.000-08:00

New support groups, organizations, and other information have been added to our main web site for the following conditions:
Rett Syndrome (6 new)
Angelman Syndrome (1 new)
Prader-Willi Syndrome (1 new)
Cerebral Palsy (2 new)
Peutz-Jeghers Syndrome (2 new)
Keratoconus Syndrome (4 new)
Machado-Joseph (Spinocerebellar Ataxia 3) (2 new)

Toy Buyers Beware! Warning issued on lead content

2008-12-09T14:12:00.000-08:00

"Senator-elect Morgan Carroll and The Arc of Aurora want you to hear the words of The Ecology Center: toy buyers beware! The Ecology Center, a Michigan-based nonprofit organization, recently released its 2nd annual consumer guide to toxic chemicals and toys in which it announced that one in three toys tested for the 2008 holiday season contained "medium" or "high" levels of concerning chemicals including cadmium, mercury, arsenic, PVC, bromine, and lead..."

Read the full story

News from One Special Blog

2008-12-08T13:05:00.001-08:00

New items have been posted in the following areas of our Web site and message boards as follows:

Our companion web site has new listings for:

Northwest's Child after school program in Washington State has been added to the special schools listings.

Anchor Center for the Blind in Colorado is listed in special schools and organizations.

The Medical Research message board has new info on:

Neuropathy (1)
Atrial Septal Defect (1)
Keratoconus (1)

The Conferences & Workshops message board has new info related to:

Asperger's Syndrome (1)
A Transition Fair in Fayetteville, GA (1)
A Financial Planning workshop in Tewksbury, MA (1)
Mood Disorder (1)

The General Information and Announcements message board had new info related to:
Cerebral Palsy (1)
North Dakota budget increases for disability services (1)

Be sure to check our message boards and web sites regularly.

Fueling the Economy with the Help of Elderly and Disabled People

2008-12-05T08:00:00.000-08:00

Recently, I published this article on Op-Ed News.

Elderly and disabled people are not typically considered to be the populations that can contribute to turning an economy around. Many people view the provision of services to these populations as one-way charity that simply comes out of the pockets of taxpayers into the pockets of those served with no return to society save for the satisfaction of “doing the right thing.” The reality is that investing in social programs creates new businesses, jobs, and more taxpayers and should be part of the new economic plan for America along with infrastructure projects and green technology.

Today, Medicaid waiver programs that provide home and community-based services to the elderly and disabled are dramatically under-funded on both the federal and state levels. Hundreds of thousands of people who qualify for, and desperately need services are not receiving those services in states across the country. In a capitalist society, it means there are hundreds of thousands of “customers” whose needs are not being met.

The ramifications on families are that caregivers must leave full-time careers to care for family members. Many of those caregivers would be working in careers that would have significant impact in society and they would be paying taxes on their income. Some of these families are forced into poverty and must also receive other public benefits in order to provide for their families. In an economy like the one we have today, even middle income families who are caring for an elderly or disabled family member are vulnerable to foreclosure and job loss affecting the only working person in the home.

The Medicaid program provides institutionalized care to elderly and disabled people. Section 2176 of the 1981 Omnibus Budget Reconciliation Act gives the Health Care Financing Administration the authority to waive certain Federal Medicaid regulations to allow the States to include home and community-based services in their Medicaid coverage. Institutionalized care costs significantly more per person than community-based care, but because of the lack of adequate funding in the Medicaid waiver programs, there is also a lack of service providers who can offer home-based nursing care, job coaching services, host homes, and other services. In a capitalistic society of supply and demand, the demand is there but the supply is not because the providers cannot get paid. Families cannot afford the out-of-pocket expenses for such care and insurance does not cover it.

If the federal government fully-funded the Medicaid waiver program, and re-examined the State match requirements, more service providers would emerge and more family care-givers would be able to return to their careers. Furthermore, individuals who are currently institutionalized could move into less-costly community-based care where they could live fuller lives. People with disabilities would also have new opportunities to also become employed, draw paychecks and obtain their own private insurance coverage.

As America re-thinks the way we do business, it is in all of our best interests to consider the needs of our most vulnerable citizens and to value their needs as part of our solution.

A Life You Don't Imagine for Your Child with Special Needs

2008-12-03T09:55:00.000-08:00

Today we observe International Day of Persons with Disabilities. For parents of children and adults in the United States, it is a day when we continue to try to improve the special education and support systems to ensure the dignity of life for our loved-ones.

There is an alternative life - one that we parents in America would not want to imagine, as summed up in the opening line from an article from Tanzania:

"They spend most of their time on the streets desperately hunting for their daily bread. Yes. From merciful able- bodied passers-by."

Now that is a life none of us is planning for our children.

I recently learned that parents of children with special needs in Singapore must pay out of pocket for every single service for their children. Nothing is covered by insurance and schools are not required to provide services. If parents are told their child needs an evaluation, the parent must pay for that.

In Haiti, the poorest country in the Western Hemisphere, one writer says, "children with disabilities are often abandoned or neglected since they are seen as consumers of precious resources who can contribute little to the family."

That is a statement that would cause major protests in America.

While we American families do face many challenges, we have indeed improved the potential of the lives of our children for decades to come. It is often parents who have led the charge for change in America, which is another often-forgotten fact.

On this day, Americans have an obligation to remember that we can continue to show the world by example that people with disabilities should be fully included and supported. We do that by continuing to fight the good fight for all concerned.

Today, envision an America where every parent can see their child with special needs living their fullest potential. Do it for America. Do it for children in Haiti, Singapore, and Tanzania.

News from One Special Blog

2008-12-01T13:27:00.000-08:00

New items have been posted in our conferences and workshops message board related to:
Tourette Syndrome (2 new)
Down Syndrome (1 new)
Autism (1 new)

A new message board has been added to our blog for Medical Research News. Today, we have posted news in this new message board on:
Down Syndrome (1 new)
Autism (2 new)
Language Impairment (1 new)
Prader-Willi Syndrome (2 new)
ADHD (1 new)
Rett Syndrome (2 new)
Peutz-Jeghers Syndrome (1 new)
Tourette Syndrome (1 new)
Tuberous Sclerosis Complex (1 new) links also to autism, epilepsy, mental retardation
Hippel-Lindau disease (1 new)
Hypophosphatasia (1 new)
Spinocerebellar ataxia 3 - also known as SCA3, or Machado-Joseph disease (1 new)

Does Your Child Have Tourette Syndrome?

2008-11-28T16:15:00.000-08:00

Parents often come away from the pediatrician’s office with a major question: Does my child have Tourette Syndrome? Because Tourette’s is known to be one of the most common genetic conditions, and it is also co-existent with a number of other, often less-known conditions, the question of whether or not your child has Tourette’s can lead you down a new path of discovery – and help.

Tourette's Disorder or Syndrome is a neurological disorder characterized by involuntary body movements and vocal outbursts (Tics) for at least 12 months. What can be difficult for parents is the fact that there really is no test for Tourette’s. The diagnosis is currently made by history and observation.

The motor tics involved in Tourette’s are also characteristic in other disorders and a parent should know that further investigation should be done if your child is experiencing tics. An appointment with the geneticist can be a good first step to checking for other genetic disorders. However, an article from the American Journal of Human Genetics by researches from Yale called Progress in the search for genetic linkage with Tourette syndrome reveals a genetic link to Tourette’s. Tics are also associated with taking certain medications.

Some excellent articles such as Tourette Syndrome and Other Tic Disorders and Tic Disorders can help parents to understand and to formulate questions to ask your doctor.

The National Tourette Syndrome Association provides information and referrals from experts with backgrounds in social work, psychology, education or related disciplines. They operate 125 support groups, which can be found through a link on their web site.

We have also assembled links to other online support groups on our main web site , some organizations and other web sites on Tourette's, and we have discovered and collected noteworthy blogs that you can visit about Tourette’s as well. Check the Blogs section to the right of this article to find links to those relevant blogs. Books about Tourette’s can be found by visiting our Our Special Store in the books section.

We are not doctors. The above is for informational purposes only and is not a substitute for medical advice from your doctor.

Observance of International Day of Persons with Disabilities

2008-11-28T13:31:00.000-08:00

International Day of Persons with Disabilities takes place on December 3rd. The 2008 theme is "Convention on the Rights of Persons with Disabilities: Dignity and justice for all of us".

Parents of children and adults with disabilities in the United States have many things to be thankul for in comparison to many other countries. We actually have a working government that provides for the rights and services for people with disabilities. It may not be perfect, but it is a far cry from many other countries.

In observance of International Day of Persons with Disabilities, take a few minutes to take some action on an issue that is closest to your heart. Here are some suggestions for things you can do in the name of the day:
1. Write a letter to the editor of your newspaper about the event. Cite what is good in your state, and what needs to be improved for "Dignity and Justice for All of Us." A day like International Day of Persons with Disabilities gives all of us an "in" with the media. They are looking for time-sensitive, personal stories.
2. Contact your representatives to thank them for any of the work they have done in the area rights, education, and human dignity.
3. Host a small open house and invite other families of children and adults with disabilities, your case manager, your special ed teacher and anyone else who has supported your child.
4. Write a letter to your friends and family about the day, and why it is important to you and your child.
5. Start a blog and link your blog to this blog and hosts of others we are linked to that are highlighting the issues faced by our population.
6. Take a moment to be grateful for any support you do receive.

If we each do one small thing, it amounts to many voices.

What Can Parents Do About Budget Cuts Impacting Services for Our Kids?

2008-11-20T11:39:00.001-08:00

As we reported in a previous post, many states are making drastic budget cuts due to the new economic conditions. The cuts are impacting schools, hospitals, and programs for children and adults with disabilities.

The Wall Street Journal reports:
"At least 15 states, including Alabama, Virginia and Massachusetts, are targeting such funding, mostly for programs that allow low-income shut-ins to receive personal care -- like cooking, cleaning and basic health services -- in their own homes, according to the Center on Budget and Policy Priorities, a liberal-leaning Washington, D.C. think tank that studies state budgets."

This week, New York's Governor Patterson proposed changes that will cut disability-related funding, according to WPTZ and WHAM.

LAURIE A. MARTINELLI, executive director, National Alliance on Mental Illness in Woburn, MA commented in a letter to the editor about cuts in Mental Health Services in Massachusetts in the Daily News Tribune.

What is a parent to do?

If you have never been an activist before, now is the time to become one. Here are some steps you can take:

1. Every citizen has access to our own legislators. To find out who your representatives are, go to Project Vote Smart to get their names. Most legislators have easy to locate email an office addresses. Write them, call them, and even better - meet with them.
2. Gather your friends together and go to your state Capitol when the budget is being debated. Talk to legislators.
3. Write letters to the editor of newspapers.
4. Find and join your local advocacy group that deals with your child's disability and work with them. There are all kinds of advocacy groups like the Arc, NAMI, and others.
5. Locate people you know who may have influence. Look for them at church, at PTA meetings, at work. Ask for their help.
6. Get involved in your own local political party activities. They are easy to find by simply googling the name of your county and your party.

It is in our best interest to all rally to fight budget cuts that are going to reduce services for people with disabilities.

Nebraska Finds Out: There Are No Services

2008-11-19T15:29:00.000-08:00

Nebraska's Safe Haven law is revealing something extremely important about our country: services for children with bi-polar disorder and other disabilities are severely lacking.

Read a story about the law and the problems

Of course, parents of children and adults with disabilities knew this all along. There are gaps in services that are leaving many families desperate for help. Many mental health programs have been lost to budget cuts. The thing that people in general do not know is that there is no safety net for these families. The alternative to not receiving services is exactly what is happening in Nebraska.

Desperate times call for desperate measures, as they say. I hope the world does not judge these parents harshly. More than that, it is a call for change.

Wishing that the Public Would Just "Get it?"

2008-11-19T14:17:00.000-08:00

How many times have you been out in public and watched people get that strange look on their face or become impatient with your child because he or she is not responding "appropriately" when spoken to? At times, it seems that people just don't get it. Maybe your child cannot process information quickly enough to answer in the expected period of time or has a stutter.

We've created this shirt to help give the public a clue about why your child is not responding.

Buy this shirt by clicking here

You will also find many other similar awareness products in our store.

New Conferences Posted

2008-11-19T13:49:00.001-08:00

Today, we have posted several new conference announcements in our forum.

Click Here to View Conferences

We strive to find meaningful educational experiences for parents of children and adults with disabilities. If you know about a conference that you think should be listed in our forum, contact us at oneblog@commulinks.com.

Relocating Your Family and Your Special Needs Child

2008-11-17T15:36:00.000-08:00

Families that include a child or adult with special needs have unique issues to face when considering a move to another state. Special education and community services are not as portable as one would think. Parents should conduct a great deal of research before making a decision to move, or face dramatic changes or lack of services in the new state.

I had a personal experience with this problem back in 1989 when I moved from Florida, where my son received intensive special education services in school, to Colorado where they told us he did not not qualify for any services with the "label" he had at the time. This posed a tremendous problem for us, and my son was placed in a regular ed classroom with no supports until his teacher complained to the teacher's union.

I have met many other parents over the years who have had similar experiences. A mother I met at Special Olympics was shocked to learn that her adult son would be placed at the bottom of a decades-long waiting list in Colorado when they moved here. In their previous state, the young man was picked up at home every day to go to work in a sheltered workshop, and had many other activities that provided a meaningful life for him. In Colorado, he would get nothing while on the waiting list. Since many states have such waiting lists, make sure you know this before you move.

If you are considering a move to another state and your child or adult is receiving services that you do not want to lose, it is important to do your research. Follow a few steps to gather the information you need before you move:

1. If you have a child on an IEP, contact the school district in your new state to find out if the services your child is receiving will transfer.

2. Contact the local Parent Training Information Center (PTI) in that state for information about special education in the new state. A link to a list of PTI's can be found on our Web site.

3. Learn all you can about services and waiting lists in the state where you are moving. An excellent resource is the State of the States in Developmental Disabilities by the Coleman Institute. Even if your child or adult does not have a developmental disability, this report will give you a good understanding of how each state supports people with disabilities.

4. Find a support group like Parent to Parent, or one for your child's individual condition, to talk to other parents about their experiences in the state.

5. Check into the Medicaid waiver program in your new state. Find out if they have the same waiver programs you currently have. Parents of children with autism will find that only a few states have autism waiver programs.

Sometimes a move to another state for a "better" job can be completely overshadowed by the lack of services for your child or adult - or lack of Medicaid-funded programs to pay for those services. Paying out of pocket can often cost more than a family earns.

On the bright side, however, it is sometimes possible to move from a state is not going to offer services for your child or adult to a state that will. If you have options for where you will move, compare each state side by side and make a decision that will provide the most supports for your child or adult with special needs.

Community Supports May Finally Happen in Illinois

2008-11-17T15:19:00.000-08:00

A class action law suit has been settled in Illinois which will finally provide families with access to community supports instead of institutions.

Read more about this settlement:
Lawsuit Settlement Gives People with Disabilities More Options

The suit will finally help Illinois to catch up with most other states, which have provided funding for community-based services for people with developmental disabilities for many years. Individual states have the ability to each determine how they will deliver services that are funded, in part, by the federal government. Many states offer both institutional-based settings and community-based services. The United States moved away from institutional settings long ago and states were encouraged to provide the community-based services options which are both more effective and less costly.

Illinois families that want to access community-based services may still have an uphill climb, however. In order to provide the services such as host homes and supported living services, there needs to be service providers. While there will eventually be providers to do this work now that there is funding, it may take time for this to happen.

Special Schools Page Added to Web site

2008-11-17T15:09:00.000-08:00

One Special Place has added a new resource to our Web site containing links to schools for children with special needs. If you know of a school that needs to be added, please let us know.

Visit the new Special Schools Page.

Economy Impacting Services for Kids with Special Needs

2008-11-13T15:01:00.000-08:00

The economic crisis is adding to the problem of the lack of resources for states to provide services for children an adults with special needs. Some states already have decades-long waiting lists for services, and states are experiencing losses in revenue from sales taxes because consumers are cutting back on spending. Furthermore, because of rising unemployment, many people will also pay less in income tax.

Stories of the impact are beginning to emerge. In South Carolina, Independentmail.com reported yesterday that: "The $700 million worth of budget cuts coming out of Columbia are hitting Anderson on East Beltline Boulevard by threatening to close a day care and therapy center especially for the area’s children with disabilities."

In Maryland, the state cut $297 Million dollars from the budget, according to a report from WTOP News. The cut included reducing rates paid to service providers, which wll ultimately impact the state's ability to provide services to adults and children with special needs. Advocates in Maryland are extremely concerned about the impact.

California's major budget crisis stymied First Lady Maria Shriver's plan to launch a campaign to find employment for people with developmental disabilities, according to an article in the Los Angeles Times dated July 2008.

Ohio is facing its' own crisis, according to the Bacyrus Telegraph Forum, where budgeting for services is not keeping pace with demand.

Clearly, parents of children and adults with disabilities are going to face more difficulties in obtaining services. While we would like to say there is an alternative to these services, there really is not. Parents need to take a very active role right now to help make our case to our elected officials to prevent budget cuts.

News from One Special Place

2008-11-13T11:30:00.000-08:00

The One Special Place blog and companion Web site are under constant development in order to make them the best resources we can offer to parents of children and adults with disabilities.
Here a few items of note today:
1. We added two new pages to our Web site - Financial Resources, and Medical Resources.
2. We are in the process of advertising our sites and seeking job listings for our job forum.

Please continue to return to see further news and updates about our progress to serve you and don't forget to check out our products, which are helping to make all of this possible.

Participating in Medical Research

2008-11-12T13:36:00.000-08:00

The National Institutes of Health recently released a new Web site about participating in medical research. The site provides information about how participation in medical research affects the family, the importance of medical research, your rights during the process, and how to get started in a study.

My son has participated in several medical research studies which have ultimately provided great insight into his condition. Some studies may not provide you with a great deal of immediate information, but they do contribute to long-term understanding of the issues our children face. They can also spur other interest in research.

Weighing the pros and cons of participating in medical research is very important. There are times when my family has passed on research that would take too much time and would not produce results that were immediately helpful to us simply because our lives are already so busy and complicated.

Let us know your experiences on participating in research. Contribute a comment to this post.

Feeling Lost at Sea: Six Ways to Get Started or Start Anew to Help Your Child With Special Needs

2008-11-11T15:49:00.000-08:00

The sea of information that parents of children and adults with disabilities is deep and overwhelming at times. Yet, there are times when it feels as though there are many things we are missing, or that may exist to help our children but we are just not finding them.

Whether you are trying to navigate at sea, get your boat launched, or your are bailing water out of your sinking ship, there are several things you can do that will help you to organize your thoughts or to regroup so that you can find what you need for your child or adult.

1. Get and read through your child or adult’s medical records. From the records, create a log of items that are important to have at your fingertips. For example, if your child was diagnosed with several conditions, record the name of the condition, the doctor who diagnosed it, and the contact information for the doctor. Make a list of questions that have not yet been answered.

2. Create a log book. Log every intervention your child or adult has already received. Or, if no interventions have started, create the log so that you can be ready to keep track in the future. Be sure to include a column for notes and results of those interventions.

3. Spend some time doing research. Go to the library, and surf the Internet for new information on your child’s condition, news or resources that you have not located in the past. Become a world expert on your child’s condition.

4. Learn common disability terms. It is important to know terms that relate to how services are funded for your child. Visit our Web site for more information.

5. Find a new support group. Visit our Web site to help get you started. If one does not exist for your child’s particular condition, start one or join a group that serves parents of children all kinds of disabilities.

6. Create a written plan. After you have spent time with the items 1-5 above, take some time with your spouse (or if you are single, have a friend help you) to develop what will amount to your own strategic plan for how you are going to proceed to help your child. If possible, go away for a weekend to do this so that you can focus. Your plan should include what services are needed and how you will pay for those services.

Becoming “strategic” about how you are going to approach the many items that are on your list of things to do about your child or adult will help you to keep yourself moving forward. Create a calendar from your plan and check off items as they are completed. Always be sure that you give yourself a little reward for completing tasks at hand to help keep you motivated.