Tuesday, January 28, 2020

Promise Made, Debt Unpaid

Promises Made, Debt Unpaid

In 1975, the Congress passed the Education for All Handicapped Children Act (EHA) and it was signed by President Ford. At the time, Ford, said he was signing under duress because he did not believe we could ever educate all children with handicaps.  That law has morphed into the Individuals with Disabilities Education Act or IDEA.   The law authorized the federal government to provide 40% of the cost of educating a child with disabilities.  Well we are part way there.
Gerald Ford, were he alive,  might be happy to note that we truly have provided service to almost all children with disabilities in the public schools. We might argue about the quality of that service but the services are there.
You will note in the description of EHA, it says Congress “authorized” lots of money.  That would be the promise.  However, Congress has never since 1975 appropriated anywhere near that amount of money.  In fact, Congress has never even appropriated half of the money it has promised in the last 45 years.   IDEA was last reauthorized in 2004.
On average, states in our country spend an additional $9,369 per pupil on children with special educational needs.   Maryland spends, on average, $15,848 for each plain student in the state.   We are already one of the highest funding education state in the nation and that is before any Kirwan money is added to the pile.
Currently, Congress has appropriated 13.6 billion dollars for IDEA funding.   Last year, Maryland U.S. Senator Chris Van Holland (D) and Senator Pat Roberts (R) from Kansas introduced a bipartisan bill to gradually ramp up funding for IDEA.  It has gone nowhere.
Funding for special ed programs has attracted the attention of some of the Democrats running for President.   Most of the attention has gone to Title I programs for the economically disadvantaged.   Sanders and Buttigieg have advocated for more money for student enrichment and career and technical education.   Only Elizabeth Warren has come out strongly for an increase in IDEA funding.   She is advocating a 20 billion dollar increase ( to 33 billion) over her first term in office, citing her brief special ed teaching experience as informing her decision. Yang has talked about his son with autism on the campaign trail.  If past is prologue, Congress will be more likely to boost funding for smaller programs where a smaller amount of money yields a bigger percentage of increase and makes them look good.  What is particularly distressing is that the associate executive director of the School Superintendent’s Association instead of advocating for more money to help children with disabilities is pushing for cut backs in the mandates to serve kids as a way to save money.  One thing he is recommending is that the requirement that schools not reduce their spending on special ed from year to year be removed!
There are lots of unfulfilled promises to children with disabilities, failing to be committed to serving their needs by people in school leadership is becoming another one.

Tuesday, January 21, 2020

Letting Go

Letting Go

A constant concern for parents of children with disabilities is who will care for their child when they are no longer physically able to or have died.   There are multiple options and a relatively new one in development.
It used to be that the care of an adult with disabilities passed to either a sibling or another close family member.  For a very long time another option was a state institution.   Several decades ago those institutions closed giving way to the development of group homes.
Sometimes parents do not want to give the responsibility of care to their child's sibling.   Sometimes the sibling will not accept that responsibility or other circumstances make taking on the care of a sibling with disabilities unfeasible.  Parents may be able to provide funding for such care through trust funds or other financial arrangements but the fiscal provision is often the least of the solution.
After the close of state institutions, group homes became the default approach to addressing long-term care for adults with disabilities.  They had much to recommend them.   They were located in neighborhoods in stand-alone homes or in apartments.  Caregivers either lived in or arrived according to a shift schedule.    Sometimes the residents left during the day to go to work or to pre-arranged daytime activities.   It was a living situation as close to typical as possible. Larger organizations organize regular social gatherings so that clients can have a broader social life.  The homes are usually managed by a non-profit organization that receives funding from a state agency at a fixed rate for each bed it provides.  Agencies are limited in the number of “beds” provided by the funding from the state agency.  There is never enough money for all of the people needing residence.   Consequently families try to get on a waiting list early.  Group homes give families the comfort of knowing that a non-profit will care for their loved ones and that family members can visit and monitor.
Now there is another model for long-term residence and care for adults with disabilities.  These are communities of homes that are in some ways patterned after communities for adult seniors without disabilities.   These communities are made up of apartments and/or homes.  The communities are being developed by real estate entrepreneurs often in conjunction with a founding family.   Some of the communities like the one planned for Rockville, MD will be a mixed occupancy community with approximately 25% of the units reserved for people with disabilities.  Other communities are made up of purchased stand-alone houses and condo apartments.  It is not unusual for the communities to have the same type of amenities often found in senior communities, a club house, pool, or cafĂ©.  Medicaid funding can pay for an aide to come into the housing for several hours each day or longer as needed.  
The good news about these communities is that they are a community and not an isolated group home within a typical residential area.  So residents can visit with each other easily and form social connections.  The bad news is the development is slow and expensive.
One way or another families of children with disabilities will at some point be families of adults with disabilities. The options are modest and a plan needs to be in place for the time when families will need to let go. 

Tuesday, January 14, 2020

Toughen UP

Toughen Up

It was the best of times, it was the worst of times… we were all going to heaven, we were all going direct the other way”.   Some readers may recognize these words as the beginning of Charles Dickens' Tale of Two Cities.  There are lots and lots of quotes about life handing us lemons and what we can do with lemons to make them more palatable.  The point is that into every life a bit of rain will fall and we all have to learn to use an umbrella.
The skill of dancing in the rain is called resilience.  Somehow adults have decided that they have a very strong need to protect children from learning to get back on their feet and try again.   One of the advantages of participating in athletics is that kids learn how to lose and still stay on the field or court.  Why don’t we want our kids to learn those same skills as they navigate their lives.
Used to be that when kids got into trouble at school parents asked what the child had done to warrant the trouble.   The default position of parents was that a teacher would not be “out to get you” unless you had done something you were not supposed to do.
Now, however, the attitude is to protect and defend the child and to assume that the child’s perception of events is what actually happened.   So notes will come to school that say, “my child said that teacher made fun of him when he had trouble reading, why did you do that.”    The note does not say, “my son felt embarrassed yesterday when he had trouble reading, can you give me some more insight into what that situation might be?” The first response presumes the child’s perception of events is accurate and puts the teacher on the defensive and guilty until she is proven innocent.   The second response is characterized by two adults working toward a successful reading experience. Yet there is a third response that is more in the child's best interest.   Neither previous approach asks the child, “did you speak with your teacher about how you felt?”  This third approach empowers the child to solve his own problems.
College deans speak of helicopter parents who intervene with staff to rescue their offspring from negative experiences. Parents say things like "I do not want my child to struggle."  These same young adults grow up to not be able to deal with the various slings and arrows life will throw our way.   It is fine for caring adults to help a child or young adult navigate the comeback after a failure, but the navigation itself needs to be the responsibility of the child/young adult.  No successful adult runs from the worst of times.  Successful adults plow through them to reach the best of times.  That skill doesn’t just happen on a given birthday.  The training needs to start early on so the skill will be fine-tuned when life feels like we are all going direct the other way.

Tuesday, January 7, 2020

Is LRE more or less restrictive

Is LRE more or less restrictive?

Federal and state law require that children with disabilities be served in the least restrictive environment (LRE).  The legal definition of this is that to the “maximum extent appropriate” a child with disabilities should be educated with non-disabled peers.  The thinking behind this requirement is that being with plain kids will be advantageous to students with disabilities for several reasons.
The major reason for the benefit as it is described, is that children with special needs will be exposed to the general education curriculum.   The term “exposed” sounds like the general ed curriculum is a disease.  But it also reflects some understanding of just how much benefit the child will get from that curriculum.  “Exposure” does not mean the child with special needs will benefit from the general ed curriculum just that he or she will be present when the teacher presents it.
Another benefit for LRE is supposed to be that kids with disabilities will learn social skills from being with non-disabled kids.  They will also develop friendships with these children and in that way become fully included in the mainstream of social life.  They may also be targeted and bullied because they are different from the plain kids but we won't go there.
Many parents have embraced these benefits for their children.  There have been numerous instances when parents have gone to a due process hearing or court to ensure the placement of their children in the general ed classroom even when the school system has opted for what, according to the law, is a more restrictive placement.
If we get more granular with the term “restrictive”, it is essential to ask restrictive for whom?  
First the general ed curriculum.  The purpose of any curriculum is to prepare a student for life after school so that the adult coming out of school can be a full participant in society.   It is not clear how exposure to algebra II or to writing a research paper is going to give a young adult with disabilities the skills needed to pursue a job or participate in a democracy and that is assuming the child actually becomes competent in the content.
The notion that kids with disabilities will be accepted as full social peers by the plain kids is a wonderful pipe dream.  When any of us looks at our own social circle we discover that the circle looks a lot like the folks we see in the mirror each morning.  As the old folks used to say, “birds of a feather flock together” and indeed they do.
So how exactly how are the so called “restrictive” placements restrictive to kids with disabilities.  They get the curriculum that is appropriate to their post-secondary needs and they do make friends with the other birds in the so-called restrictive placements.   These friendships tend to last for many years, well into adulthood.
There is one more element to the current definition of LRE- it is cheaper than the variety of special education placements.   But I am sure that variable never entered into the equation when the requirement and definition of least restrictive were developed.  Careful you don’t bit your tongue that is firmly planted in your cheek.