Biggest issues facing PA’s disabled in 2009

The Arc put together a paper covering the top issues facing the developmentally disabled and their families in 2009. Feel free to read it. If you’re interested in learning more about the issues and disputes surrounding educational services and legisation, mental health/mental retardation services, the waiting list, adult protective services, and capital punishment, this paper is a helpful resource.

 

Disabled or not, we’re all the same

That was the theme of my podcast interview with Ed Sickles, one of The Arc’s board members. I talked to him recently as part of our Meet the Boards series. You can listen to our conversation here:

Ed has been involved with The Arc and helping the disabled since he was 15. That was about 40 years ago. He was a student at Abington High School, and started a recreational program for special needs students.

Listen as he tells the story of why he became so passionate about the disabled at an early age, and how he’s turned that passion into his life’s work. Ed is now a teacher at Upper Perkiomen High School in Pennsburg. Most of his students have minimal disablities.

Ed is also a service adviser for various programs at the school and in the local community that support special needs children and adults.

And his deep commitment of course extends to The Arc, where he’s served as a board member for 30 years. He spends time with the advocacy, parent, and foundation boards. Ed is also the legal guardian to a man with Down syndrome.

He is an inspiration to anyone who wants to help the developmentally disabled live better, fulfilling lives. In our interview, Ed drills down into what he thinks is the No. 1 reason preventing the developmentally disabled from achieving respect and equality. He also talks about how unfortunate financial circumstances have added to their struggle.

While Ed is concerned for the future of the developmentally disabled, he is still hopeful. He shares his perspective on how to we can create and take better advantage of educational opportunities to provide a higher quality of life to the disabled.

If you’re looking for some meaninful, low-cost ways to get involved, Ed offers some suggestions, and explains how we can help the community understand that disabled or not, we’re all the same and deserve the same opportunites in life.

 

State budget short-changes disabled again

Unfortunately, not much has changed for the developmentally disabled in Gov. Ed Rendell’s proposed 2009-10 state budget.

There is no increase in state funding for special education. Meanwhile, basic education for students without disabilities is slated to receive a 5.7 percent increase, or $300 million, in new state spending.

Last year’s budget included a 1.7 percent bump for special education, and basic education received a 5.5 percent boost.

Funding looks equally grim for those on the waiting lists. State figures show 4,568 adults with intellectual disabilities are on the emergency waiting list, and another 9,733 are on the critical waiting list.

Despite the dire needs of these individuals, the budget includes $15.1 million to serve just 293 adults from the waiting list and another 500 young people transitioning from special education into adult life.

Of course, the economy is affecting everyone, and fiscal challenges are understandable. That means funding is being allocated to what the governor believes are priorities — and it seems the developmentally disabled are not one of them.

That’s why we continue to encourage you get involved, write to you legislator, and donate what you can. Need pointers? We found some more good ideas and tips on what you can do on the PA Waiting List Campaign site.

 

Get the scoop and get involved in special education bills this Thursday

If you want to learn more about two important special education bills pending in the Pa. House of Representatives, it’s worthwhile to attend the house hearings for these bills on Thursday, Oct. 2.

The House’s Special Education subcommittee is holding public hearings for HB 2438, which proposes to restore the old rule that school districts (instead of families) have the burden of proof in special education dispute cases.

The subcommittee will also have a hearing for HB 2536, which calls for greater neutrality when hearings officers are assigned to these cases.

You might be aware of the burden of proof issue from The Arc’s May episode of “Building Bridges in the Community” on BCTV. For a refresher, check out our video of the episode:

For many years, the burden of proof in special education disputes between schools and families was on the school district. A 2005 U.S. Supreme Court decision (Schaffer v. Weast) changed things by saying, unless state law says otherwise, the burden falls to the party seeking relief — which is almost always parents.

Parents of children with disabilities are at a significant financial, legal, and practical disadvantage against seasoned school district lawyers and bureaucrats if they have to prove the inappropriateness of an education program. The Arc is in support of passing the bill to make the burden of proof fair, having it fall on the shoulders of school districts.

Meanwhile, the Office for Dispute Resolution (ODR) currently provides the majority of hearings officers for these special education disputes. ODR is funded through the Pennsylvania Department of Education (PDE).

Over the past few years, some families have become concerned that the education department has exercised too much control over the ODR, is assigning officers that are biased toward schools, and is blocking families from introducing additional expert evidence documenting their children’s needs.

The Arc believes the ODR should be housed in an independent location, and be governed by a publicly accountable board of directors appointed by the governor and state legislators. The board should have equal representation between parents of children with disabilities and public school officials. This would create greater neutrality and give families the equal footing they deserve in dispute cases.

The hearings will be held at 9 a.m. on Oct. 2 at West Chester University in Sykes Hall, 700 South Hyde St., West Chester. Hope to see you there!

 

Status updates on major legislation

There are a few major legislative issues in the hopper for Pennsylvanians with intellectual and developmental disabilities. With quite a bit of activity to keep track of, I drew up a quick summary of where we stand on issues with the state budget, autism insurance bill, and graduation competency assessment regulations.

State budget

The Waiting List initiative proposed in the Rendell budget for 1818 seems to have been kept intact.

Community mental retardation programs are to get a 1 percent “cola” (Gov. Rendell had proposed zero.) BUT, a 1.3 percent across-the-board cut was agreed to, and the Department of Public Welfare (DPW) must absorb it in some, but not all, of its programs. The Pennsylvania Office of Developmental Programs (OPD) is apparently one of several programs that must absorb the cut. It is not yet clear what Estelle Richman, Secretary of Public Welfare; or Kevin Casey, Deputy Secretary of the ODP, will decide to cut.

Special education was decreased from the Rendell budget to a 1.6 percent increase instead of a 3 percent increase. Basic education will get a 5.5 percent increase with every school district getting at least 3 percent.

DPW Early Intervention to get 1 percent “cola,” but the budget number suggests a concurrent cut. More details on this are needed before we can say for sure how provider rates will be affected.

The Pennsylvania Department of Education (PDE ) Early Intervention’s 6.5 percent increase proposed in the Rendell budget was kept intact.

The DPW’s autism program’s proposed $13 million increase in the Rendell budget was reduced to a $10 million increase, which is still a doubling of the funding. It’s not clear yet as to the rationale for this reduction, but the new autism program is still slated for a significant increase.

It’s still not clear whether Adult Protective Services start-up funding is in the budget.

Autism Insurance Legislation

H.B. 1150 was passed last week and signed into law yesterday. Last week’s advocacy to improve the bill after the Senate had removed the “medical necessity” definition paid off in that a few important service definitions were included in the final bill, satisfying autism advocates. This bill is now law.

Graduation Competency Assessment Regulations

These proposed regulations have been pulled. These regulations would have required competency testing for students wanting to graduate. Advocates opposed these regulations because of the feared adverse impact on students with disabilities. These proposed regulations are off the table for the remainder of the calendar year, but apparently the State Board of Education has indicated it will try again next year.

Thank you for your advocacy in recent weeks on these very important issues! As always, turn your browser to our Action Alerts page for updated info on proposed legislation, and to support motions that improve the lives of the developmentally disabled.

 

The Arc’s state budget recommendations

A press conference was held today by Pa. Rep. George Kenney, who unveiled the report completed by the House Resolution 159 Waiting List Advisory Committee. I represented The Arc of Pennsylvania, and also spoke during the conference.

This report is timely given that Gov. Rendell and the legislature are in the final weeks of state budget negotiations. Among the five key recommendations contained in the report, one calls for an end to the emergency waiting list in two years and the critical waiting list in five years. Another calls for an annual COLA so that current service capacity can be sustained and waiting lists are not longer needed.

You can read the full report, or read through a summary of the recommendations below.

Recommendation 1: The General Assembly and the governor should make the elimination of the waiting list a priority. Providing supports and services to Pennsylvanians with mental retardation is a core function of Pennsylvania state government.

State officials should commit — in word and in action — sufficient funds and other resources that will a) eliminate the emergency waiting list within two years; b) eliminate the critical waiting list within five years; and c) anticipate future need so that all Pennsylvanians with mental retardation have their service needs met within a reasonable period of time.

Recommendation 2: The General Assembly and the governor should build on their investment in special education and dedicate annual funding to ensure students with mental retardation who are transitioning to adult life receive services they need.

Recommendation 3: The General Assembly and the governor should establish a fiscal policy that includes a reasonable and consistent increase annually based on actual costs of maintaining existing service capacity.

Recommendation 4: The executive branch should be directed to convene relevant state agencies and stakeholders to identify methods for predicting and communicating needs to the appropriate agencies, and make sufficient information available to inform the budget process.

Recommendation 5: The General Assembly should direct the executive branch to conduct a process — with stakeholder involvement — to examine ways to find greater efficiencies, including more community-integrated and consumer-controlled service models.

 

Graduations give reason to celebrate and take action

Graduation is a milestone, bringing closure to your past achievements and opening the next chapter in your life. Whether its is from grade school, high school, or college, graduation should be a cause for celebration. But for special needs children, that isn’t always the case.

In the news last week, there were two stories about elementary school graduations. At a Staten Island autistic elementary school, students had written notes to Jennifer Lopez, asking for signed autographs. But JLo had a better idea: Come to the school and perform live for the kids at their graduation.

And perform she did. The kids got the thrill of a lifetime singing and dancing to JLo’s hit single, “Let’s Get Loud.” It was a special way to remember the culmination of their accomplishments.

But at a California elementary school, graduation was a much different story for the disabled students. Each and every one’s photo was left out of the yearbook. While the school claims it was “an oversight,” some parents believe it was done on purpose. How’s that for a way to remember your graduation?

These stories exemplify the wide range of treatment developmentally challenged students get in the school system. Some schools have it right. Children are encouraged to reach for the stars. They are shown their rights as individuals, and have goals and the means to achieve them.

Other schools are part of the problem, continuing to treat special needs students as lesser members of society. What does it say if your child’s memories and photographs are left out of their yearbook? That there is still more work to do.

We need to bring equality to the school system, giving all students the same opportunities to excel. Special needs students have every right to be included in the yearbook.

Facing more serious setbacks than just pimples, students with developmental disabilities should find graduation a cause to celebrate, not cause for action. Parents and pop-stars aren’t taking advocacy lying down, and neither should we.

 

Oppose Graduation Competency Assessment Regulations

We sent this action alert around this week. The public comment period ends Monday, June 16, so it’s not too late to voice your opinion. Oppose the Graduation Assessment Regulations proposed by the Pa. Board of Education at our Action Center Web site.

Oppose Graduation Competency Assessment Regulations

Proposed Rules Will Hurt Students With IEPs

If adopted, new regulations proposed by the PA Board of Education in Harrisburg would prevent students from receiving high school diplomas unless they earn a “proficient” grade on 6 of 10 new standardized state tests. This new requirement would be so even if the student attended school for 12 years, completed all of their courses, passed all 12 grades, earned good grades on all of their research papers and projects, etc. These tests are called Graduation Competency Assessments (GCAs) (also known as “high stakes” graduation).

For students with an IEP, the regulations would still require them to take the test, but it would exempt them from having to earn a “proficient” grade in order to graduate. Students in special education would be harmed because school resources would likely be diverted to the task of getting general education students prepared to score “proficient” on the standardized tests. (For illustration purposes, if a class has 20 general education students who will not graduate unless they score “proficient” and 5 students with IEPs who will graduate regardless of whether they score “proficient,” then the pressure on teachers and school administrators will be very strong to focus most or all of their time and attention on the 20 general education students.

In addition, this new proposed regulation would very likely cause a flood of students attempting to get into special education as a way to avoid having to score a “proficient” in order to graduate. With the increased number of new special education students, time and resources focused on students who truly need special education services would be diverted and/or spread thin.

These new regulations have not been approved yet. The PA Board of Education is accepting public comments through June 16th. Official comments must be made to Jim Buckheit, Executive Director, State Board of Education, 333 Market Street, Harrisburg, PA 17126-0333, or to jbuckheit@state.pa.us. Comments will be shared with the Independent Regulatory Review Commission and the House and State Education Committees, who will also have an opportunity to comment as well.

 

Burden of proof for special ed. hearings: parents or schools?

Every other month, we air a show on Berks Community Television (BCTV), where we discuss issues facing the developmentally disabled in Pennsylvania.

Last month we decided to heat things up with a new format. We’re inviting the movers, shakers, and experts on both side of the fence to discuss the issue openly in the hopes of educating everyone on the full scope of the topic.

Obviously, we believe our positions are stonger, and we hope to convince people to support our side. But it’s crucial that all interested parties be given an opportunity to present their views.

Here’s our first attempt at this. It’s not perfect, but we’re still excited by the effort and outcome.

Tom Brogan, Chair of the Political Science department at Albright College, moderated a discussion between Rep. Dennis O’Brien, Speaker of the Pa. House of Representatives; and Michael Thew, Executive Director of Lincoln Intermediate Unit #12.

They debated House Bill 2438, which Rep. O’Brien sponsored. It proposes to restore the old rule that school districts (instead of families) have the burden of proof in special education hearings.

The next show airs on July 3, and will discuss the mental retardation system changes that will take effect on July 1, 2009. Scheduled participants include Edward Michalik, Administrator of the Berks County Mental Health/Mental Retardation Office; and Kevin Casey, Deputy Secretary of the Pennsylvania Office of Developmental Programs. I might also participate as a panelist!

We’ll keep readers updated on the panelists and moderator as the air date approaches.

We encourage everyone to watch live on BCTV, and call in to voice their opinions on air. Keep this number handy: 610-378-0426.

You can also watch the show on BCTV’s Web site. If you miss it, we’ll also be posting the shows here on the blog. We have a backlog of videos which we’ll be posting soon, too, so watch this space.