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Common IEP Mistakes

Jeffrey Hartman-@jhartman1276iepfolder

School employees generally try to do their best for students with disabilities. Most of them came to the field to do some good, but face many barriers in trying to do so. They also make honest mistakes.

The barriers facing school employees begin far beyond the walls of schools. Special education has had funding issues at the federal and state levels for decades. Districts with the greatest overall budget problems often have the largest special education populations. Special education law is complicated and unforgiving, and schools struggle to keep up with it. Timelines test them and force staff to hurry. Special education teachers have more responsibilities than their training usually covers. The act of trying to educate students who struggle to learn is inherently difficult. The job burns people out and they leave, creating an environment in which schools lack experienced staff. These aren’t excuses. These are realities.

Amid these realities, schools make mistakes. Teachers, therapists, and administrators usually don’t deliberately deny services to students with special needs, though this certainly does happen on occasion. More often, school members of IEP teams simply come up short of their intentions. They lack the resources to adequately provide for students, or the individuals charged with providing services are pulled in too many directions to effectively implement IEPs. When team members are awash with competing responsibilities, the potential for mistakes and negligence rises.

Just because a school faces barriers and school employees are strained doesn’t mean they should get a pass on failing to implement IEPs. They have an obligation to collaborate with parents to create appropriate IEPs and to implement these with fidelity. While parents should understand that school employees struggle to provide what the IEP demands, they need not accept negligence.

What follows is a set of common mistakes made by school members of IEP teams. Parents can use this as a rough guide for filtering for possible errors and misgivings on the part of the school team. The list isn’t exhaustive, but it should serve as a place to begin critically examining how the school team is performing.

  1. IEP goals that aren’t measurable

This mistake might have more to do with a special education teacher’s writing skills or understanding of protocol than with any resource strain the school is experiencing. A teacher might recommend sensible goals, but these might be worded in a way that renders them immeasurable. If the goals aren’t measurable, the team can’t effectively gauge progress. Strong goals should name the student, cite a condition for the goal (under what circumstances it should happen), describe the skill to be performed or the content to be mastered, and give criteria for performance. For example:

Strong goal: Given a list of 25 words from the 2nd grade Dolch sight word list, Jeff will pronounce at least 20 words from the list without error in 5 consecutive trials by (date).

Weak goal: Jeff will improve his sight word vocabulary.


  1. Vague or generic specially designed instruction

Similar to issues with immeasurable goals, this mistake affects the usability of the IEP. Specially designed instruction should be tailored to the specific student. The IEP should specify where it will take place and how often it will be needed. For example:

Strong specially designed instruction: One additional class period of extended time in a resource room for mathematics tests that include constructed responses.

Weak specially designed instruction: Extended testing time.


  1. Insufficient transition component for students at either 14 or 16

Schools sometimes struggle to plan adequately for student transition. In some cases, the transition section of an IEP can be left sparse for a student who should be considered for services. At age 14, a discussion of transition must be part of the creation of the IEP. This can happen earlier, but it must be in place for students turning 14 during an IEP term. For students turning 16 during an IEP term, specific transition services must be described. In particular, for students 16 and older, the IEP should include stated transition outcomes, present performance levels in relation to these outcomes (these should include reading and math levels, but also performance on transition assessments and interest inventories; performance in relevant and specific areas such as knowledge of personal information might be needed), goals and objectives in support of outcomes, and detailed services that will support goal progress.

4. Outdated or inaccurate present levels
Present levels of performance should be within 6 months of the IEP meeting date. Exceptions can include students who have been absent for long stretches. Otherwise, IEPs should showcase recent performance data, even if the IEP is written in between evaluation years or if the student isn’t likely to show much growth between testing periods. All assessments used should be appropriate for the student. Recent anecdotal information should accompany the new levels, replacing or supplementing previous information.

Parents must take time to review present levels to be certain these are individualized. Teachers pressed for time might copy and paste text from IEPs of other students. Parents should check to see if names and pronouns are consistent throughout documents.

5. Incorrect dates or outdated documents

Related to the item above, parents should check IEPs for correct dates. An IEP term should be a full year minus a day from the IEP meeting date. Exceptions can be made for students scheduled to graduate within the term or for upcoming evaluations. The date programming is to begin should be agreed upon by all team members and shouldn’t allow for any lapse in service from the previous IEP. Parents should keep track of timelines on their own to ensure schools don’t allow documents to fall out of compliance by overlooking them.

  1. Unauthorized changes in related services

Related services such as physical therapy shouldn’t change without parental consent. Therapy levels can’t increase without an evaluation, but therapists can decrease them between evaluations. They can’t do this without discussing the matter with parents. A related service can’t be added or deleted at whim. Parents should check the related service section of a new IEP against the previous IEP for any differences the team might not have addressed.

If a statement of need exists in an IEP or evaluation, the IEP should address this through specially designed instruction or a related service. For example, if a need in communication is noted, the IEP should include some provision for speech. Similarly, anecdotal information about problematic behavior should be a trigger for a behavior plan.

  1. No discussion of ESY

Although extended school year services typically are reserved for the most disabled students, a conversation about the appropriateness of these services must happen for all students. Teams must verify whether or not a need exists. IEP meetings shouldn’t conclude without such a conversation. The IEP must reflect the decision of the team regarding eligibility.

  1. No discussion of placement options

Placement typically remains stagnant for students who receive special education services. However, the point of scheduled evaluations is to determine if services continue to be necessary and if the level of services continues to suffice. Every IEP meeting should include a conversation about whether or not services need to continue at their current level or at all.

The IEP must contain an explanation of why specialized services are necessary. Progress or participation in the general education curriculum must be noted. The degree to which disabling conditions affect progress or participation must also be noted. The IEP must reflect how much time the student will spend outside of the general education environment. School members of the team should be reviewing all of this with the parents at each meeting.

Placement options are a crucial part of any discussion of discipline involving a student with an IEP. Parents should be mindful of any placement options being considered during disciplinary proceedings.

  1. Documents not in native language of parents

The school must provide documents in the native language of the parents, which is increasingly easy to do. Interpreters must be available for meetings and phone calls as well. With interpretation services widely available, schools have little excuse for not providing these.

  1. Team members absent from meetings without parental consent

IEP team members only can be excused from IEP meetings if the parent is notified beforehand of the pending absence and gives approval. If the parent doesn’t approve, the meeting must be rescheduled. Emergencies do happen, but the team can’t move forward without the consent of the parent.

  1. No procedural safeguards notice

The school must inform parents of procedural safeguards, which are rights outlined by special education law. These rights are described in a document schools must provide to parents (typically around 30 pages). For any parent new to special education, these are vital.

  1. Insufficient notice for meetings

Schools must formally invite parents to special education meetings. They must offer a range of participation options. Meetings sometimes must be held unexpectedly and immediately, but in most cases, notice should be sufficient for parents to make arrangements for attendance. Parents also should have sufficient opportunity to review documents, in particular, to read evaluation reports prior to IEP meetings.

Just as schools might face time and resource constraints that limit the ability to address special education mandates, parents might face interruptions and distractions that pull attention away from some of the nuances of special education documents and relationships. Some of the mistakes mentioned above might be just that—mistakes. Parents need to be diligent in checking for these and willing to diplomatically bring them to the attention of school officials.








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Understanding Alternate Assessments

Understanding Alternate Assessments:
A guide to standardized testing options for students with IEPs


By Jeffrey Hartman - @jhartman1276

Standardized testing of any kind has become a sore subject across the country. A politically-charged public debate has developed over the value and purpose of standardized assessments for all students. The complexities of assessing students with IEPs have come to light during this debate. While this is an issue of the moment, assessment options for students with IEPs have been a concern in special education circles for decades. Parents who are new to special education might not be aware of how special education law addresses the issue.

According to the IDEA, NCLB, and the ESEA, students with IEPs must be tested via state assessments whenever their peers without IEPs are tested. Disabilities do not exclude students from testing, and even students with the most severe disabilities must be tested. To the uninitiated, this might appear to be an overzealous effort by state bureaucrats who don’t understand the nuances of teaching students with special needs. While this might be true in part, the testing of students with disabilities also can be attributed to the demands of parents.

The concern over testing students with disabilities used to be exclusion. Parents and advocates feared that if students with disabilities were not tested, teachers and schools would lack accountability for them. Without assessments in place, the assumption was teachers wouldn’t be motivated to provide any kind of rigor for disabled students. Creating alternate standards and assessments of these standards became the way to combat this.

Today, students with disabilities can be tested in a variety of ways, and the choice is largely based on relative ability and IEP team decision. The basic options are to take an assessment with accommodations, or to take an alternate assessment based on alternate standards (instances of exclusion based on religious belief or psychological condition exist, but these are rare). Which option is best depends on the level of disability of the student. Each IEP team determines the appropriate testing using eligibility criteria particular to each state.

For students who follow the general education curriculum with accommodations, taking the regular state tests with accommodations is the most common option. The majority of students with IEPs go this route. Ideally, anything a student uses in class to help minimize the effect of a disability should be available as a testing accommodation. Not every possible accommodation is allowed, but typical accommodations such as extended time, testing in a separate room, and large print tend to be permitted. Test administrators can read directions to students and can read items on math and science tests, but students are almost always on their own to read everything on reading tests. Allowable accommodations vary from state to state.

In some states, an intermediate option exists. Students with IEPs are sometimes permitted to take a modified version of the test that assesses performance according to the same standards but at a lower reading or mathematics level. Such modified tests are most often offered as alternates to grade level math tests. They tend to come with a catch that makes them unattractive to administrators: they have mandated performance ceilings. That is, students who take the modified tests might automatically receive low scores before even beginning the tests. The reason for that is that these students take the modified tests because they would struggle with the grade level versions. While these modified tests might provide more useful performance data, administrators might push IEP teams to not make students eligible for them.

These modified tests aren’t available in all states. What must be available in every state is a genuine alternate assessment for students with moderate to severe disabilities. The IDEA doesn’t specify how states handle alternate assessment, but it does require their availability. NCLB and ESEA each enforce this. Most states have alternate standards for students who would benefit from instruction in life skills. IEP teams can (and should) use these standards when developing goals for such students. The alternate assessments can then be authentic tests of an appropriate curriculum and of IEP progress. Commercial alternate assessments get used in lieu of state designed tests in some states, but these typically align with any alternate standards that are in place.

IEP teams determine what testing options will be best for students. They use set criteria when reviewing eligibility for genuinely alternate --and not just modified-- testing. Most students do not qualify. For the few who do, several tiers of each alternate test exist in many states. This is intended to provide the best chance for finding a suitable assessment for students with highly disparate skill levels. A test that is too rudimentary might be insulting, while a test that is too demanding might be demoralizing. While some students function at levels that no test will appropriately fit, efforts are nevertheless made to include these students in the opportunity to be assessed.

Alternate assessments usually focus on a combination of functional academic content knowledge and skill performance. The balance is tilted towards skill performance for students who would struggle with functional academics. The tested skills are intended to come from the alternate standards-based curriculum the students follow. Again, the ideal situation is to have a match between IEPs goals in life skills domains and the areas assessed through the test. Some states have systems in place for aligning goals with alternate assessment anchors. A fair testing scenario can be achieved even for students with highly particular skill sets. Teachers and parents will receive student performance reports that can be useful for future planning and can have some merit as indicators of progress.

These assessments aren’t without drawbacks. On the schools’ end, they can be complicated to administer, sometimes involving intensive preparation of testing materials and multiple staff members to oversee test administration over what can be several days. For students, the tests should feel similar to authentic instructional activities, but some students might respond poorly to the structure of a testing situation. As mentioned, there will be some students for whom no test will authentically gauge their abilities. Even students who can adhere to the tests might not generalize their learned skills well enough to give a truly indicative performance. Parents might have apprehensions stemming from these issues and might question the value of the tests versus the consternation they cause. States and school districts have varying methods of including alternate assessment data in overall school performance on tests. Curious limits exist for how much data can be used, thus calling into question the usefulness of the assessments.

Alternate assessments are a real option for students with moderate to severe intellectual disabilities. They are a mandated way for these students to participate in meaningful assessment related to their programs. A very small portion of the student population is eligible for these assessments, but options do exist for higher functioning students who need accommodations. The current climate in American education might appear to be threatening the status of mandated assessments, and the long-term effects of the opt-out movement remain to be seen. For now, parents of students with disabilities should investigate what alternate assessment options exist per their state’s department of education. If a student must take a test, the most appropriate test should be sought.



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Guide to Services-Day Programs

by Heather Johnson

Typically, the most urgent need families have post-graduation is some kind of safe, supervised and productive activity for their child to engage in since they are no longer attending school. Traditionally, the options for post-school-age day programs were either supported employment in the community, an activities-based day program, or a sheltered workshop. Luckily, the quality and choices offered in day programs has increased in recent years, and there are now excellent programs to choose from. Some definitions: a sheltered workshop (or prevocational program) is intended to help individuals develop skills to work in the community, usually by doing piece or factory work and being paid per completed piece. An adult day program provides supervision and opportunities to participate in cooking, art, music or other types of recreational activities. Job supports, on the other hand, provide individuals with assistance in finding, learning and maintaining employment in the community. Adult day programs are generally located in a large setting, with staff ratios typically between 1:3 to 1:15.



However, the difficulty now lies in the intricacies of the CMS Final Rule. The Centers for Medicare and Medicaid Services (CMS, also known as Medical Assistance), is the national organization that provides services. CMS is changing the way services are provided in order to maximize supports and monitor the programs. The Final Rule refers to the specific mandates the federal government is now imposing on the states. The biggest change with the Final Rule is to get as many people as possible into community jobs and to de-segregate sheltered workshops. One long-term issue within the service system is the lack of genuine employment opportunities for our folks, and the push to get as many people employed in the community as possible has led to new regulations. Basically, this means that everyone must be supported in finding employment before going to a more traditional sheltered workshop or activity-based day program. As of 7/22/2015, anyone 23 years old or younger is going to be required to complete the Office of Vocational Rehabilitation process before they can attend a day program or receive job supports through a waiver. Those over 24 and already in a workshop are “grandfathered” into their placements and do not need to go through OVR unless they want to get a job or add job supports. The OVR process provides funding for an assessment of employability and 90 days of on-the-job supports, at which point the waiver could take over providing services for that person to remain employed.

Some people are not going to be successful in a community job. However, it has also been recognized that most day programs are considered segregated because they offer no opportunities for community integration. Now, day programs and sheltered workshops are required to provide individuals with some kind of community integration, whether this is volunteering in the community, having community members come into or also use the program, or other methods of exposing the individuals to opportunities beyond the facility setting. In order to attend a program like this, though, you must have a letter from OVR stating that employment is not a possibility. The full scope of the changes affecting these programs is still unknown. According to the Pennsylvania Department of Human Services, “at this point, no decisions or definitions have been made regarding adult day program settings. The transition plan states that the Department will review Pennsylvania regulations, waiver service definitions, policies, and provider standards to assure compliance with HCBS final rule.”
Some things to consider: it is usually in the best interests of the individual to complete the OVR process while still in high school. Most, but not all, high schools offer transition services which include this assessment and support, so make sure to specifically request it. Also important: if community employment is appropriate for your child, the money made impacts his or her Social Security benefits (this includes piecework in sheltered workshops!) For more information on any of these topics, feel free to contact your supports coordinator or myself.

Heather Johnson is a Supports Coordinator Supervisor at The Arc Alliance, a nonprofit organization supporting families and individuals of all ages with developmental and other disabilities. In addition to her personal experience as a family member of those with special needs, she has been working for 18 years in all areas of the special needs community. Heather is one of the guest bloggers who will periodically post information for Kokua Network members.

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October is Down Syndrome Awareness Month

Thank you to Anne Hollis and her family for creating another fantastic video for us to share.


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Pros and Cons of Extended School Year

Pros and Cons of Extended School Year

By Jeffrey Hartman - @jhartman1276


Extended School Year (ESY) services are a set of supports designed to prevent students with IEPs from losing established skills during the summer break. While any student with an IEP potentially could be eligible, ESY services are reserved for those who exhibit skill regression or delayed skill recoupment following scheduled breaks from school. Evidence of regression and recoupment issues can include the suspected potential for established skills to diminish. Each IEP team determines student eligibility, but students with the most severe disabilities tend to automatically qualify.

Every IEP team must consider ESY services. Teams use a set of criteria to decide whether or not ESY services are warranted. Meetings for students thought to be eligible are held midway through school year to give parents ample time challenge if the school denies eligibility. In some districts, arrangements for ESY services need to be made early in the spring for logistical reasons, but districts are obliged to ensure that services will be available for any potentially eligible students regardless of when eligibility decisions are made.

ESY services are not the same as summer school or a summer camp. They are not meant as enhancements to existing learning programs. An ESY program is meant to prevent a student from losing a skill. Services are intended to prevent a lapse or reversal of progress. Because of this, ESY services aren’t comprehensive. Rather than resembling an abbreviated version of the regular school day, ESY services focus on just one or two IEP goals. Teams concentrate resources on maintaining progress towards these particular goals.

Even though schools must provide ESY services to eligible students, attendance isn’t mandatory. Parents can send eligible students every day, every other day, or no days. Students need not attend, but school must have everything in place in case students do attend. This includes any related services that might be needed to support goal progress. The IEP must describe everything necessary to make ESY services successful.

Deciding whether or not to send students to an ESY program can be difficult for some parents. Several factors can complicate this decision. The eligibility criteria might make clear the potential need for the services, but it doesn’t tell parents whether or not services will be of benefit. Clearly, this decision must be made case-by-case, but below are some pros and cons of ESY services that might assist in making the decision.




  1. ESY services are free. They are considered part of a student’s Free Appropriate Public Education (FAPE) and therefore must come at no cost to parents. This shouldn’t be a determining factor when deciding against other potential summer placements, but parents shouldn’t decide not to send out of a fear of costs.


  1. While not comprehensive, the services will continue the effort to support progress towards one or more goals in a structured and highly individualized manner. ESY services will have a deliberateness and rigor not seen in other types of summer programs.


  1. The program will provide some measure of stimulation and engagement, even if tailored to a limited area of need. The target area will be of principle concern, but some naturally occurring socialization will take place.


  1. School-based related services such as speech or occupational therapy will continue, albeit in a limited fashion. These will be meant to support the specific setting of ESY, but progress made during the regular school year has some opportunity to continue.


  1. The services will take place in the safety of a school with certified teachers rather than in a camp setting that might involve volunteers or undertrained staff.




  1. The student might have different teachers, therapists, and assistants than during the regular school year. If so, they will need time to get to know the student, which could amount to time lost during an already short program. Additionally, services might be in a different classroom or building with different classmates than the student knows. The changes could be a difficult adjustment for some students.


  1. ESY services almost always happen during a truncated school day and week. Considering this, progress towards even the limited aims of the program can be strained, especially when feeding, dressing, and toileting needs are included. Essentially, the point of the services can be derailed by the limited time available.


  1. School buildings undergo renovations during the summer months. While a building might be hosting ESY services, it also might be having work done to the air conditioning or plumbing. Such renovations could inadvertently interrupt services, even though the services are guaranteed.
  2. Students are grouped as much as possible by relative abilities, but the possibility exists that a student might be mixed into a class with students who have remarkably different needs. This is dictated by space, available staff, and the number of students with particular needs enrolled.


  1. ESY services aren’t likely to be as enjoyable for a student as other summer placements might be. In the spirit of normalization, ESY services are quite different than what students without disabilities experience during the summer. A student might need a break. Another student might benefit from a general camp experience, or from one focused on developing some other aptitude. Maintaining skills is important, but so is enjoying childhood.




Functional school districts with ample resources should be able to provide a worthwhile ESY experience. Districts that struggle to provide for students might offer ESY experiences that could be outright detrimental. Parents must remember that gains from ESY services are likely to be slight and some loss could occur despite enrollment in the program. Attendance is not mandatory, so sampling a program while reserving the right to withdraw might be worth a try. Each case must be decided with what is best for the student in mind.





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A Guide to Services for Special Needs Adults – Residential Options

This is blog post is one in a series by contributing blogger Heather Johnson.

The plan for most adults with disabilities is to eventually get a place of their own in the community, and there are a couple of ways to make that happen. This blog will discuss some options and some things to consider when making residential plans.

Community Living Arrangements (or CLA’s) are what most people know as “group homes.” Group homes can be for between one to four individuals; any placement with more than four people is known under a different name. One-person homes need to be authorized by the Office of Developmental Programs (ODP) because it is important that our individuals aren’t isolated from the community; in addition, one person homes are much more expensive to fund. Because of this, one person homes are challenging to obtain through the waiver. CLAs generally have 24 hour staffing, and staff is hired by the provider agency to do things such as assist with activities of daily living, cook, provide transportation to day programs/appointments/community outings, and medication administration. The maintenance of the house (cleaning, laundry) varies depending on the functioning level and goals of the individual, but ultimately is the responsibility of the provider agency. The staff-to-client ratio varies dependent on the functioning level and need of all the individuals in the house, but is generally 1:3 or 2:4. In addition to the daily fee paid through the waiver, an individual in a CLA also has to give 72% of their social security to the provider agency for room and board fees. Any additional expenses, such as clothes, cable, money for community events, etc. are not included.

Group homes are not the only residential option. Sometimes, people will decide to open their homes up for individuals with a disability to live with them as family; this service is called Life Sharing or Family Living. The idea behind Life Sharing is that the individual will have as typical a life as possible, and be included in a family setting instead of a staffed arrangement such as a CLA. In Life Sharing, the individual is included in things like holidays and weekend excursions, and follows the schedule of the family. This service also has a daily rate paid by the waiver, and 72% of the individual’s social security goes to paying for room and board. Generally, families get paid a monthly stipend from a provider agency that covers bills, food, and household expenses (such as cleaning supplies). The family in most cases is responsible for medication administration and transportation, and the chore arrangement is agreed upon before the individual moves in. Most families agree to one year of services, but that can be shorter if the arrangement isn’t working out. However, there are individuals who have been with the same family for years. In this service, the most important thing is ensuring a good match between the family and individual. Unfortunately, parents/siblings/other family cannot be Life Sharing providers for their own family members.

Some other residential options include Reverse Life Sharing, in which a caretaker moves in with an individual in their own home, and Unlicensed Homes which only have a maximum of 30 hours of staffing per week.

All these services require a Consolidated Waiver, as the daily rate is between $100-$400 per day. There are a few other options for individuals without that waiver, such as boarding homes or low-cost apartments that can be paid for with Social Security; unfortunately, these places can be few and far between.

The future living arrangements for family members with an intellectual disability can be a hard decision to make, but your Supports Coordinator should be able to inform you of the options available to you based on individual resources.

Heather Johnson is a Supports Coordinator Supervisor at The Arc Alliance, a nonprofit organization supporting families and individuals of all ages with developmental and other disabilities. In addition to her personal experience as a family member of those with special needs, she has been working for 18 years in all areas of the special needs community. Heather is one of the guest bloggers who will periodically post information for Kokua Network members.

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A Guide to Services for Special Needs Adults–An Overview

This is blog post is one in a series by contributing blogger Heather Johnson.


Once you have your waiver, you are eligible to start receiving services. This blog series will explain and explore some of the more popular services, but before we get into specifics, here are some general things to know:

*If your waiver has a cap, you cannot go over that amount of money. This sometimes means making hard choices, such as between summer camp or respite. Also, keep in mind that if you are at the cap, you still might have to make hard choices in July when the new fiscal year begins, because services can increase in price between one year and the next. Always be prepared to have to re-evaluate your services regularly based on cost.

*Putting services in place is not a fast process. Usually it takes three to six weeks to begin services. The first thing that happens is you’ll have a meeting with your supports coordinator (SC) to discuss what the needs are and what options are available. Next, your supports coordinator will send out referral packets to provider agencies, which basically serves to give basic information about the individual to see if the provider has vacancies or a staffing match. After that has been established, you’ll either take a tour of the facility so everyone can meet each other, or have an intake meeting at home. If everyone on the team agrees, a start date will be established. The SC will then do what is called a critical revision to the individual support plan (ISP) to start the service, and submit it to the county. The county Administrative Entity (AE) requires at least ten business days to approve a service; keep that in mind when beginning services. In emergent situations this can be circumvented, but is not recommended.

*You will not get paid money from the county or federal government. Many people have the idea that they will get a lump sum of money to spend as they see fit. The process is this: once you have a service in place, the provider bills the waiver directly. There are some options for more control in terms of hiring staff or becoming an agency-with-choice provider, which are very complicated but work for some incredibly organized individuals with time to invest. For more information on PPL (a company that provides alternative service arrangements) and agency-with-choice (AWC) providers, reach out to your supports coordinator.

*Primary caregivers, in the majority of situations, cannot also be staff. Unfortunately, you can’t be paid to provide care to your child. Sometimes a family member can get hired by a provider to provide services, but rarely ever the primary caregiver.

*There are sometimes qualifications that have to be met before certain services can be provided. For example, if an individual should need nursing, a letter of medical necessity is required from the doctor as well as a denial letter from the insurance company. For job services, the person must have gone through the office of vocational rehabilitation (OVR) and obtain documentation that either the 90 days of services have been used or the person is not a good fit for OVR. The reason for this is the waiver is the payer of last resort-if there are any other possible funding streams for any service we have to attempt to go that route first.

*Consolidated waivers are incredibly scarce. It’s a lovely idea to have your adult child fly out on their own by moving into a community living arrangement (called a CLA or group home) and having a job while you still live at home and are healthy, and ideally, that would happen for everyone. Unfortunately, there just isn’t enough money to go around. Right now, some people in dire situations do not have services because funding is not available. If an individual is safe where they are, they will not be prioritized for community placement. I apologize for the harsh truth; the funding is controlled at the government level. If we as a community really want change for our adult loved ones with disabilities, we all need to get on the phone with our legislators and demand funding for Medical Assistance, it’s the only way to get the money we need.

As always, should you have questions about waiver funding you can contact your Supports Coordinator, your county Administrative Entity, or me.

Heather Johnson is a Supports Coordinator Supervisor at The Arc Alliance, a nonprofit organization supporting families and individuals of all ages with developmental and other disabilities. In addition to her personal experience as a family member of those with special needs, she has been working for 18 years in all areas of the special needs community. Heather is one of the guest bloggers who will periodically post information for Kokua Network members.

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Kokua Network Answers: What is the ABLE Act?
By Steve Potts, Founder, Kokua Network

Passed by the Federal Government in December of 2014, the "Achieving a Better Life Experience Act," or ABLE Act is a landmark bill that will affect how disabled individuals and their families manage finances.  The ABLE accounts have been compared to 529 education savings accounts for disabled individuals.  Each state must adopt their own version of the act, and most state legislatures are currently working to make the ABLE Act a reality.

Prior to the adoption of this Act, saving money for a person with special needs could be difficult and required forming a Special Needs Trust.  That is because individuals who receive government benefits must keep their assets titled in their name or for their benefit under a certain amount.  Those special needs trusts protect the assets from being a countable resource when determining benefits but they have an expense in setting them up  and the money in them could only be used for certain purposes.  Per the ABLE Act, so long as the ABLE account balance remains under $100,000, the money in the account will not be counted by the government as an asset of a disabled individual in assessing eligibility for resource-based benefits.  And the fee in setting up an ABLE Account will likely cost less (although that remains to be seen).  If the ABLE account were to exceed $100,000, SSI would be suspended, though not terminated, but medicaid would remain unaffected.

An ABLE account opened for a disabled individual is less restrictive than a Special Needs Trust in how the funds can be used; most notably, the money in an ABLE account can be used for housing whereas money in a Special Needs Trust cannot without having an effect on benefits.  Anyone can contribute to an ABLE account, including the disabled individual.  If a disabled individual works and earns money or is the recipient of an inheritance, that money can be invested in an ABLE account and their government benefits can be protected.  Earnings on an ABLE account will not be taxed, though contributions to the account are not tax deductions.

This form of saving will not completely replace the Special  Needs Trust - it is only available to individuals whose disability occurred before age 26 and does have contribution limits which will be determined by State Legislatures.  Further, a big disadvantage is that funds in an ABLE account are subject to medicaid payback, whereas funds in a Third Party Special Needs Trust are not.

Used in conjunction with a Special Needs Trust, an ABLE account will provide an excellent way to protect the needs of your loved ones with disabilities.  In most situations, investing in both can maximize your loved one's government benefits while minimizing tax exposure and the potential for paying money back to the government.  Take our Special Needs Trusts bootcamps to learn more about them and if they are right for your family.

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Do We Need a Behavior Analyst?

The following post is written by one of our contributing experts, Donna Mattison, M.Ed., BCBA, BSL

Often, parents hear the term Behavioral Services and think that their child’s behaviors are not extreme enough to require working with a Behavior Analyst. Or, parents worry that behavioral therapies are always intense, heavily formatted programs with no flexibility for real-life situations. Read on to learn more about the reality of what a Behavior Analyst can do to help you and your child.


Does your child have behaviors that you would like to see decrease? Some examples might be screaming/crying/tantrums, hitting/kicking, eloping from the area, ignoring safety and routine directions, a restricted diet, difficulty with toilet training, problems with developing age-appropriate skills and play or interacting socially with peers or siblings.

Would you like to replace these problem behaviors with appropriate behaviors? These might include better communication, consistent following of safety and routine directions, eating a variety of foods, becoming toilet trained, safe behavior, more age-appropriate skills, play and socialization.

These are some of the many areas in which a Behavior Analyst can help. A Behavior Analyst works with you to work to replace problem behavior with appropriate behaviors. Depending on what you want the Analyst to focus on, assessments will be done to find out where the child is in skill and behavioral development.

One type of assessment involves looking at skills the child has, in order to determine where the child is functioning. Then, the Behavior Analyst sets up a program of skill development in areas of need. Some examples would include eating a variety of foods, developing independent toileting, direction following, play, socialization and/or communication.

Through a behavioral assessment (also called a Functional Behavior Assessment), the Analyst will try to determine why the child is exhibiting problem behavior (the function of the behavior).

One type of behavior an Analyst may help with is if a child screams and tantrums to get or keep an item or activity he/she wants or to avoid or escape a non-preferred direction.  For example, the child may scream/tantrum to get the iPad, but he may also scream/cry when given a direction to brush teeth or sit down at table. The problem behaviors are the same (screaming/tantrums), but the function of the behavior is different.

After the functions of the problem behaviors are determined, the Behavior Analyst will develop a plan to replace the problem behavior with appropriate behavior that will serve the same function. Suppose the child is using screaming/tantrums to get an item or activity. Suggested alternatives to screaming would be teaching the child to request what he wants. Once the child is consistently requesting appropriately, the next step would be to work on having the child learn to wait get what he wants and to accept it when he is told “No” without resorting to problem behavior.

While tantruming is one example of a behavior that a Behavior Analyst can help with, Analysts have methods for developing your child’s skills in a wide variety of areas. Additionally, a Behavior Analyst can work with the parents and caregivers to help ensure consistency throughout the child’s environment. This consistency will help the child learn the skills more quickly and keep the skills they’ve learned when it is time to move on to the next set of skills.



Donna Mattison, M.Ed., BCBA, BSL, Co-Director Sensible Solutions for Children, LLC, 610-733-7785

Behavior analysis services to families, schools and agencies.




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What is a Waiver?

The following is a guest blog post by Kokua Network contributor Heather Johnson.

“Waiver” is a word that is bandied about a lot in the Intellectual Disabilities/Autism Services field. Waiver is actually short for Medicaid Home and Community-Based Waiver Program. When the government originally stepped in to provide funding for individuals through Medicaid, people were only being served in state-run institutions and similar centers. The waiver was created so that the federal government could “waive” the Medicaid rules for institutions and use those funds to provide services in the home and community instead.

Waivers are comprised of state and federal dollars. The contributions are not exactly even, not consistent across states and are adjusted each year depending on the budget. In Pennsylvania, the majority of services for individuals with an intellectual disability are funded through two types of Medical Assistance. Intermediate Care Facilities for Person with Mental Retardation (ICF/MR) are private or state-run institutions that are entitlements and cannot be capped or subject to waiting lists, although there are criteria for eligibility. Home and Community-based Waivers support people in their homes and/or the community. In Pennsylvania, there are two types of Home and Community based waivers, the Consolidated and the Person/Family Directed Services.

The Person/Family Directed Services Waiver, or P/FDS, is capped annually at $30,000. This is by far the more common waiver, and is generally used to provide day supports and transportation to individuals once they have aged out of the school system. Every year, the state government votes on a budget that allots a certain number of P/FDS waivers to graduates, called the Graduate Initiative. Most people with P/FDS waivers live at home with their families or on their own in the community.

The consolidated waiver is uncapped for individuals, meaning there is no top limit to the amount of funds available to pay for services. However, the statewide cost cannot exceed the cost of providing the same services in an ICF/MR. Therefore, there are far less consolidated waivers available for individuals and the waiting list is much longer. Consolidated waivers usually are used for individuals who live in a Community Living Arrangement (CLA or group home), Life-sharing, have intense medical needs or any combination of services that cannot fit under the $30,000 P/FDS cap.

There are many more waivers available to individuals depending on their diagnosis and specific need. For a comprehensive list of waivers available in Pennsylvania, you can visit Each waiver has different criteria and is designed to provide different services depending on the circumstances of the individual. The application also differs depending on the system providing the funding. Supports Coordination services are available once a person is registered with the county to help individuals and families navigate the process.

The unfortunate reality of the waiver system is that there are usually not enough funds to provide everyone with everything they want-we hope to provide individuals what they need to remain healthy and safe. However, there are many people (supports coordinators, providers, community resources, etc) who will help you advocate for yourself or your child in order to get access to funds. Waiting lists vary depending on the county, funding stream and application process, so it is always a good idea to look ahead into the future and be prepared early to get access to services.


Heather Johnson is a Supports Coordinator Supervisor at The Arc Alliance, a nonprofit organization supporting families and individuals of all ages with developmental and other disabilities. In addition to her personal experience as a family member of those with special needs, she has been working for 18 years in all areas of the special needs community. Heather is one of the guest bloggers who will periodically post information for Kokua Network members.


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