A couple of weeks ago my 21 year old daughter moved out into her own house.  I have been working and planning on this moment since she came to me nearly 12 years ago.  My daughter has a genetic syndrome (cri du chat syndrome) and has severe to profound intellectual disabilities.  She has multiple physical disabilities, uses a wheelchair and is deafblind.  She does communicate wants with sign language and gestures.  She isn’t independently mobile unless she is crawling on the floor, and relies on others for help with all ADLs.

Three years ago we relocated to a new town because I found a home that had a carriage house in the back yard.  This sounds more glamorous than it is.  It really is an old carriage house, and was built at the time when homes in my area were built with summer kitchens in the back yard, and was moved to the property to serve as the summer kitchen.    Prior owners illicitly used this backhaus as rental property.   With the help of my friend Amy Robertson, I got our town to agree to allow my daughter to live in the backhaus with a caregiver/roommate as an accommodation under the Fair Housing Act.   Because she is a relative, we are not violating any zoning provisions, but the backhaus was never approved as living accommodations, hence the need to have it approved.

I spent the summer having the backhaus renovated to make it livable for my daughter.  I then began the search for a roommate to live with her, and found a delightful young woman to join my daughter.  My daughter is on the waiting list for developmental disability services, so she is receiving attendant care through the Medicaid HCBS-EBD (elderly blind and disabled) waiver.   Through the Consumer Directed Attendant Support Services (CDASS) program, I am able to hire, train and supervise her attendants.  She has attendant care throughout the day.  Her roommate provides overnight care  five nights a week.  Due to my own need for awake care to attend to my ventilator, my attendant keeps an eye on her through a video monitor the other two nights.

My daughter is so happy in her own house.  On her first night, I had one of our attendants go out and check on her.  My daughter sat up in bed, removed the covers from her head, and signed “no, no, no!  go, go go!”  The next morning when I went out to check on her, she again signed “no, no, no!  go, go go! ” and “bug off!”  She was content.

She just finished public schools last spring.  She is happy to laze around and sleep until noon, and be awake half the night.  We are still working on getting a full routine of afternoon and evening activities to fill her days.  She goes swimming frequently and bowling with friends weekly.  She is on a waiting list for horseback riding, and she volunteers with the Salvation Army as a bell ringer during the holiday season.   She fell off the age 21 cliff a few months ago, but her post-school life is coming together nicely, and moving into her own home is a big part of it.

One down, three to go!

Almost 13 years ago, my then seven-year-old daughter was brutally assaulted by her birth family’s neighbor.  Today that man was released from prison.

I am frustrated and intellectually conflicted.  The man was given a plea bargain because the Tennessee prosecutor did not believe he could get a conviction if he went to trial.  Despite having DNA evidence, the prosecutor did not want to go to trial because my daughter has an intellectual disability and is non-verbal.  This was, unfortunately, just another example of disability discrimination that she experienced in her short life.

My daughter is the most easygoing young adult that one could ever meet.  While she still bears the physical and emotional scars, she is not vindictive, she is loving and forgiving (unless we are talking about fighting with her sister).    She has a very different sense of justice than I do.    She really does embody a biblical sense of justice.

The man who assaulted my daughter was sentenced to only fifteen years in prison, of which he served less than thirteen.  He does have to register as a sex offender, but his sentence required no mandatory period of parole, nor any sex offender treatment.   In Colorado, a similar offender would have a sentence that includes the possibility of live imprisonment, unless the offender completes a rigorous sex offender treatment program.

My family has been touched by sex assault twice.   My late grandmother was assaulted by a CNA in her nursing home.  The man who assaulted her received a life sentence.  at the time of the assault, my grandmother had an intellectual disability and was non-verbal.  Her rapist too was offered a plea bargain, but one that provides our family with a better sense of justice.

I know the men who assaulted my daughter and grandmother can effect salvation.  God is no longer in the business of punishment.  God offers all believers a path to salvation.    Even though God no longer punishes, the Old Testament gives us an example of laws that can affect a measure of justice.  Part of justice is not discriminating against victims or offenders on the basis of their disability.  Part of justice can be punishment.  Part of justice is restitution.  Justice requires an acknowledgement of the pain, suffering, and life changes for the victim.  In  may daughters case, this did not happen.  As a believer, I know that I must search for forgiveness.  I have not yet found the path to forgiveness.  I do know that one can simultaneously seek justice and find forgiveness..

Mandy Elliot with son Aidan © NBC Today Show

I was recently talking with a parent of a disabled kiddo.  The topic turned to behavior around law enforcement, and perceived excessive force by law enforcement.

I want to start off by saying that there are far too many police officers who use excessive force, commit crimes, or otherwise abuse their power.   Some police officers are outright thugs, but most are not.  Regardless of an officer’s propensity to violence, it is a matter of life and death for disabled children if they do not learn absolute respect for law enforcement.

Shortly after this conversation, a story out of the Denver area made national news because an eight-year-old child was pepper sprayed by police officers.

Aidan Elliot, a second grader, had a violent tantrum at school.  The child’s mother, Mandy Elliot,  is upset that her child was pepper sprayed after he destroyed a classroom, and was threatening to kill  school staff and police with a  stick.   Aidan’s own language scares the daylights out of me.  He says,

I got like, anger things. . . .  It’s  just who I am.  I think its not ever going to go away.

Not only does this child have it in his mind that his behavior is acceptable because it is “just who he is,” but that kind of mindset is setting himself on a path towards death. [Read more...]

Heather shortly after her adoption.

Yesterday I went to a fundraising breakfast for Denver CASA.  CASA is an acronym for Court Appointed Special Advocates.  These advocates are lay volunteers who work with children in the child protection system.  Juvenile courts appoint these volunteers to get to know children in foster care, advocate for the children,  and in many states, the CASA volunteers do independent investigations about what is in the child’s best interest.   In many of my cases, the CASA volunteers are great advocates for my clients, and great advocates for reunification.  Sometimes reunification is not possible, and in some cases, the CASA volunteer is the only consistent adult in a foster child’s life.  The only adult who remains with the child as foster parents, caseworkers, Guardians ad Litem, and even judges rotate off their case.   I have seen amazing CASA volunteers, volunteers like the one who spends hours each week driving my client 2 hours away to visit her daughter in a long-term residential placement.  I have also seen a few CASA volunteers who have an idyllic idea of parenting, and where their involvement has worked more to break up a family, than look for ways to reunite a family.  That said, those cases are the exception rather than the rule.

A CASA volunteer certainly changed my and my oldest daughter’s life for the better.   In 1998, my oldest daughter, who is my biological niece, entered foster care after a horrific abuse incident.  After a very few short months, it became clear that she was not going to return her parents.  It was also clear that other family members were not in a position to take custody of her.  She was in Tennessee and I was in Colorado.  I tracked down her social worker and told her that I was interested in taking custody of her.  The social worker seemed nice, took my information and told me that she would get back to me.

My daughter and I both have significant disabilities.  My daughter has cri du chat syndrome, a 5th chromosome anomaly that results in severe intellectual disabilities, as well as multiple physical and sensory disabilities.  I have a congenital myopathy, and at the time used a manual and power wheelchair.  I was 26 years old, and in my final year of seminary with a stable job and stable housing.

[Read more...]