Life with special needs kids | Austin, TX | Easthampton, MA | Denville, NJ

IEP and Other Information Resources for Special Needs Parents

Posted on May 23, 2022 by Parker Counsel

IEP information is vital for parents to successfully put an appropriate education plan in place for their school age children. Education, though, is only one of many important services that children with special needs will require throughout their life. Finding those services, and many times simply finding out what services are needed, is an ongoing project for parents of these children. The hunt for services and the hunt for living and support options is a seemingly never ending process.

A library shelf with hundreds of books that might contain info on IEPs, special needs trusts, and more.

Sources of Disability Information

Doctors and medical facilities are usually the first source of information and referral. Whatever diagnosis your child receives, medical providers are the first place that parents will begin to learn about their child’s needs.

Once your child begins school – which happens at age 3 in the early childhood program for many children with developmental disabilities – this will be the primary source of information for the next 15 or so years. Not only will the trained special education staff be a source of information, the administrative and program staff in the special education department will provide information on community, vocational, and other areas through the required transition planning component of each child’s IEP. Some schools do a better job of this than others, but schools are still the most readily available source of information for parents – until the child is no longer in school.

Parents should also be looking to disability groups (the Autism Society, Downs Syndrome Society, United Cerebral Palsy, etc) and parent support groups for additional sources of information. Parents can share their experiences, difficulties, and problem solutions with other parents, and often a parent group is the best way to find community resources that are not associated with the school system. Links to a few parent groups are here – Seek out others and learn from them

Maintaining Support and Information Resources After Graduation

Once a child has graduated from school, the toughest part of preparing for life begins – housing, income, medical support, etc are paramount at this time, but without the structure of school and ready access to professionals, parents and their now-adult children can get lost and feel isolated. Maintaining connections with parent groups and disability specific groups is critical at this point. Parents also should lean on medical providers, attorneys, and state program case managers for advice, information and suggestions.

If they haven’t already done so, parents of adults with disabilities need to be seeking out legal and financial professionals for information. An attorney experienced with disability planning will help prepare plans for the care and support of a disabled individual after the parents’ are gone. A financial professional will help maximize whatever assets the parents have available.

Information rich websites

The ARC of New Jersey, which is one of Parker Counsel special needs law firm’s locations, provides regular, ongoing webinars to educate parents on a wide variety of topics, ranging from school services, to social security benefits, to housing, work, guardianship, special needs trusts, social and sexuality training, and many other aspects of raising and planning for a child with special needs. All of their webinars are archived and available for viewing at any time. Some of the material is specific to New Jersey, but most of it is applicable in any state. This is a great resource for parents and very easy to take advantage of. ARC of New Jersey Parent Webinars

Parents who are still in the thick of grade school and actually still need to learn about IEP’s find a wealth of information and resources at WrightsLaw. This is not a law firm, it is a repository of huge amount of information and guidance on special education law and advocacy. Created by parents who were navigating the special education system itself, this site has come to be the first stop for parents needing to learn about their child’s rights and how to work with – in spite of – their school.

Parents don’t always pass on complete or even accurate information, but there is no doubt that having other parents to lean on for emotional support, and to be able to offer that support to others who have situations similar to your own, is key to keeping perspective and to maintaining the energy to keep going. In person groups, facebook groups, listservs, zoome groups – all offer a way to make connections and find information that might not have come to light otherwise. The Parent Center Hub has search tools to help locate groups for every preference.

Need More Information?

Parker Counsel Legal Services is a special needs law firm providing estate planning, special needs trusts, guardianship, and more to families with children who have developmental disabilities. Offices in Texas, Massachusetts, New Jersey. To see how we can help your family prepare for the future, schedule a short phone call here, or call 833-Red-BOOT (833-733-2668) or email at legal@parkercounsel.com.

A wonderful home looks different for everyone, even those who require a little help

Posted on May 28, 2021 by Parker Counsel

A large part of special needs planning involves thinking about the living situation your child will be in when they become an adult. Many families never really think about it and simply continue on with their now adult child living at home in pretty much the same way they have been all along, but without the structure of school. Other families struggle to come to terms with the fact that their child has needs the family can no longer handle on their own. And other families prepare elaborate, detailed plans for what they see as an ideal living situation, if only it existed.

There is no such thing as an objectively good or bad choice for your child’s home. The safety and happiness of your child are prime considerations, but what makes your child safe and happy may not look at all like what makes another person’s child safe or happy.

Your child’s adult living situation will depend on a number of things:

their physical and other needs
the family’s resources
the needs of other family members
your child’s wishes
available options
and an infinite number of other factors

Even between two people with the same diagnosis, the “best” living situation for each of them will vary just as it does among you and your own friends. While you may long for a rural cottage home, your best friend from high school might be living in a highrise condo in the city. Our children with special needs are no different – there is no one right answer for how they should be living once they reach adulthood.

Here are some examples of what clients of ours have done:

A family of a child with physical disabilities laid out a plan to modify their home and find caregivers so that the child could live with them as long as possible and still have mobility and room for equipment.
A family of a child with severe behavioral issues found that an outside residential care setting provided the best solution for their child and family.
A family with an adult child made plans to purchase adjoining homes so that they could maintain close contact while supporting semi-independent living.
A family with an adult child that was able to articulate her own goals for herself helped her find a group home that had the support she needed but met her goal of having her “own place.”
A family whose child had intensive medical needs determined that a nursing home setting near their family home provided the best care while allowing lots of family contact.
A family with a special needs child built an apartment above their garage for the child to live in with some amount of privacy, while joining the family for meals and socializing.
A family with aging parents focused on finding a variety of support people to provide both physical and supervisory supports to their adult special needs child so that the parents could phase out of direct care giving.

Some choices are obvious and easy, and other children’s needs present very real challenges in figuring out adult housing. Remember that nothing need be permanent – if you try something and it’s not a great fit, try something else. Housing and adult support looks different for everyone. Setting your adult child up in a home that is not with family is not right for everyone, but it is right for a lot of people and should always be at least considered. The reality is that most children with special needs will outlive their parents, and so will be in housing without family at some point in their lives. Finding that housing and preparing them for it while the parents are still alive and able to be involved may be a kindness both to the adult child and also to the rest of the family.

Once you have an idea of what you want your child’s future home to look like, talk to a special needs law firm who can help you figure out how to set it up and finance it.

While home may look different for everyone, good planning is always needed to pull off the goal. When you’re ready to start, call or email Parker Counsel Legal Services for a quick consultation on how we might be able to help. legal@parkercounsel.com or 833-RED-BOOT (833-733-2668)

More than existing

Posted on October 26, 2020 by Parker Counsel

One of the reasons parents fight so hard for their children who have special needs is that they want more for their child than simply being alive. If happiness was only about not being dead, then you’d expect the human race to be a lot happier, on average, than they are. If successfully taking care of our children with severe developmental disabilities meant making sure they were fed, clothed, and had enough medicine to not die, then our jobs as parents would be a lot simpler.

But a good life is more than that. One of the wonderful things about being human is that we get to define what a good life looks like to us, and people have defined that in vastly different ways. Those ways range from the person who wants to change the world, to the person who wants to honor the creator, whether Mother Nature, God, or some other divine entity, in everything they do, to those who strive to impact those around them in small but meaningful ways, and to those who simply enjoy their existence for as long as they have it.

Parents fight for their children to have medical care, therapeutic care, education, vocational support, and life supports so that their children can have the opportunity to reach a life that is more than mere existence. Community connection, loving and being loved, enjoying their life in whatever way that looks like for them, are the goals that parents have for their children.

Parker Counsel Legal Services provides guidance and representation to families in Texas, New Jersey, New Hampshire, and Massachusetts. Our lawyers will help you plan and prepare for guardianships and other supports for your children with special needs, and prepare special needs trusts to provide support for your child until the end of their life. Call or email us for a short phone consult to see how we can help you.

833-RED-BOOT (833-733-2668) or legal@parkercounsel.com

What do school closings mean for special education?

Posted on March 19, 2020 by Parker Counsel

If your kids are at home and you’re scrambling to find a way to keep some type of learning going, you are also probably wondering what happens to the carefully worked out IEP your child has?

Clearly we are in uncharted waters. As the health crisis deepens and normal life takes a sharp turn, it is impossible to know exactly what life will look like when we are finally able to shake hands again. This means that there are many questions we cannot answer in detail, but we do have some general information to start from.

If you have a child still in school who has been sent home, the general rule is that if services are being offered by the school district to children in the regular program, then services must also be offered to children in special education. For almost all children, the IEP cannot and will not be followed exactly, but where it can be followed, it should be. The main thing to know is that special education programs cannot simply be abandoned during this period unless the entire school program is temporarily suspended.

The second important thing to know is that the legal mandate for compensatory services will, in most cases, likely mean that schools will have to provide extra services for children in special education in order to make up for missed learning and services during the shut down. The schools will, of course, be overwhelmed with the need for additional services when they re-open, so there’s no way to know exactly what this will end up looking like, but the law as it currently stands does require schools to provide additional special education services when needed services have not been provided.

All of our students are missing learning opportunities at this time, but the law says that our students in special education should NOT take the brunt of the loss if there are limited resources.

As outlined in this factsheet, there is very little room for schools to make exceptions to the special education rules.

Stay safe out there.

Parker Counsel Legal Services serves families in Texas, Massachusetts, New Hampshire, and New Jersey. Call us at 833-RED-BOOT (833-733-2668) or legal@parkercounsel.com

Turning Fire Drills into a Game

Posted on January 18, 2020 by Parker Counsel

Every year 2400 fires occur in homes where a person with a physical or mental disability lives. Fire drills at home are probably even more important than school fire drills for families who have a member with a disability, as there may be fewer people to assist with evacuation and homes are less likely to be fully accessible and may have fewer exits than public buildings. On top of that, at least half our time at home is during sleep hours, when no one will be thinking clearly if a fire wakes them out of a slumber. The US Fire Administration has more information and safety tips here Fire Administration

At least one company has set out to help families teach their children with special needs how to safely get out of their house in the case of a fire. Fire Guide has developed an app that lets you guide your child with your own voice, and then give feedback and refine the instructions specifically for your own home and your own child’s abilities.

Planning and drills can mean the difference between safety and tragedy. Turn fire drills into play time and give your family a better chance in case of fire.

Parker Counsel Legal Services consults with special needs families in Austin Texas, Western Mass, the New Hampshire Seacoast, and Northern New Jersey. Special needs trusts, guardianship, and more. Give us a call and tell us about your family situation for some guidance on how best to plan a safe, secure future for your child. 833-RED-BOOT (833-733-2668)

Special needs planning blueprint

Posted on August 12, 2019 by Parker Counsel

This checklist keeps you organized as you work through creating a plan to care for your child with special needs in the future. Broken into sections that track the Four Keys System we use with our clients, this Blueprint will let you dive in wherever you can without missing items you need to come back to.

The Safety Dance

Posted on April 2, 2019 by Pamela

“Ah we can dance if we want to, we can leave your friends behind
Cause your friends don’t dance and if they don’t dance
Well they’re are no friends of mine” Safety Dance by Men Without Hats

Parents worry about how the world will treat their children who don’t fit the norm, especially as those children grow older. All children are a bit quirky, and even a few minutes observing the staff on a pediatric hospital ward will demonstrate how easily adult staff members expect and adapt to the “quirks” of their young patients.

Adults, on the other hand, are expected to conform to the situation, and a lot of adults with developmental disabilities are simply not able to do that, making parents worry about the treatment their adult children will receive in the community.

The good news is that community based living initiatives and inclusion in the schools provide a lot more opportunities for people of all kinds to be around individuals with developmental disabilities, and so to be better prepared to respond empathetically when needed.

A story reported recently in the Chicago Tribune illustrates how the world may eventually be. It tells the story of Walker, a man with autism who was having a very difficult day, who met the public safety officers at Loyola University Medical Center after he attacked his mother in the emergency room. And the rest of the story is as good as it can possibly get. This is how the world can be. Read the story here: A man with autism, behaving violently, winds up in the ER. The officers on duty respond – with singing and dancing.

Creating an engaged community of people around your adult with special needs

Posted on February 4, 2019 by Pamela

One of the four key planning areas for parents who have a child that will always need assistance with their care is to create a community of caregivers. For many of these, that means a guardian for personal care and a trustee for money management, but those should not be the only people in your child’s life. Think of all the different things you as a parent do for your child – you feed and bathe and shelter them, of course, and you make sure they have health insurance and medical care, but you also do things like the following:

search out activities to do
buy clothes and toys and personal items
decide (or help) on clothing and hair styles
keep an eye out for new resources
notice how caregivers and therapists treat your child and make changes if there are problems
keep track of how your child feels and acts so you’ll know if a doctor’s appointment is needed
keep company with your child and interact or play with them

. . . and this is only a very short list of the things parents do for their children, and that, depending on your own child, you may continue to do into adulthood.

When you think about the community of people you want to build around your child, these are the kinds of things that your community will be doing for your child. Some people may visit and play, some will be more task oriented, and some may never see your child in person but will be on the lookout for resources and ideas for others to use. You don’t need a large group of people who can be the full time caretaker, you need a group of people who all contribute to your child’s life in a variety of ways.

Here are some tips on creating your community:

Ask people if they would like to stay in touch with you and your child. Many people who have worked with your child develop a fondness and would be delighted to keep up with your child in the future. If you welcome them into the group and give them a way to stay in touch, you may be surprised at how fast your child’s community grows.
Update everyone regularly, and include both major events and little day-to-day details. Make sure to share lots of pictures. Staying in touch isn’t about giving a quarterly report, its’ about keeping the group informed about your child’s life, which may include big life or medical events, but also includes things like going to the store to buy clothes, or having a great day watching movies at home, or even being sad that grandma’s visit was over. Little details will keep people informed of how your child lives and what they enjoy or think about. Our family uses a Facebook group for this, which makes it really easy to share pictures, but you can do email groups, or periodic mail, or any other communication technique that you like.
Give people specific permission to be involved in your child’d life and to communicate with the people who are with your child the most. You want everyone to know that not only is it ok for them to contact you, but that you really really want them to contact you if they have an idea or a thought or suggestion. Make sure people know that even if they are not the “official” legal caretaker, their participation is welcome and invited.
Ask for help sometimes. Be sure to ask for help in a range of ways. Give people ideas about what to do to help – even if its’ as simple as asking for birthday cards be mailed to your child. If you’re trying to come up with activities your child might like, ask the group for ideas. If you want someone to come by and visit your child if they’ve been stuck at home for a while due to an illness, ask. If you’re having trouble finding a new therapist that takes Medicaid, ask if anyone would be willing to make some phone calls. In other words, let people know what you or your child would like them to do, and most of the time people will happily jump in to do it.

The more people who know your child and are around in their life, especially as your child grows older and the parents begin to transition out of day to day caretaking, the better off your child will be, and the more at peace you will be that your child will stay safe and happy.

Parker Counsel Legal Services serves families in Central Texas, Western Massachusetts, Northern New Jersey, and the New Hampshire Seacoast with special needs estate planning, special needs trusts, and guardianships. Contact us for a consultation at 833-RED-BOOT (833-733-2668) or legal@parkercounsel.com or schedule a short informational call at calendly.

Seek out others like you and learn from them

Posted on November 7, 2018 by Pamela

If you’ve been a parent of a child with special needs for very long, you know how many things you run into that the ordinary parenting books, and ordinary parents, can’t answer for you. The very best thing I ever did for myself as a parent of children with special needs is to hook up with other parents. There are many ways to do so – your school may sponsor special ed parent meetings, local disability organizations may sponsor parent meetings. Online you can find parent groups connected by email, and many parent support groups are on Facebook.

Join a group and listen. Make a point to participate by answering questions and asking your own. Share the good, the bad, and the ugly about your days. You’ll learn a lot. You’ll learn about resources for your kids. You’ll learn about treatments and techniques that others use. You’ll learn about programs for your kids. You’ll learn about ways others have found to deal with insurance, and doctors, and therapists, and bureaucracy. You’ll learn what the future may hold for your child.

And most importantly of all, you’ll learn that you are not alone. You’ll learn that there are people who understand your life and that you can talk to without judgement.

You may know I have two personal needs children of my own, and I belong to several parent groups. And frankly, I have learned and still learn frequently from the clients sitting in my office as we drift away from discussing executors and trustees and start talking about our lives. No matter where you live and how much you know, there is always more information out there, and parents are often the best source.

Some online parent groups you may want to check out:

North Shore – Seacoast Special Needs Parents

Pioneer Valley Special Needs Parents

Austin Special Needs Facebook Group

Parent Support – Veterans of the Fight

Adults with Cerebral Palsy Advising Parents of Kids with CP

Parents of Severely Disabled Kids

If you belong to a great parent group, please post it in the comments for others to check out.