Supporting (and Paying) Parent Caregivers

Anyone who has a waiver with DDA knows there is a shortage of in-home caregivers.  Parents whose children are on DDA waivers with respite and personal care hours are not receiving care to fulfill those hours.  As a result, parents are doing most if not all of the personal care.  Without revealing too much personal information in order to protect his dignity, my son with Down syndrome is 9 years old and still requires a caregiver to take care of his personal needs.  A nondisabled 9 year old can independently take care of his personal hygiene, dress himself, and get into bed consistently on his own.  A nondisabled 9 year old understands not to turn on the cooking appliances or touch the fireplace guards.  A nondisabled 9 year old does not run out into the street or parking lot in disregard of danger.  These are personal care concerns for which my son needs attention.  His DDA plan allows for about 40 hours per month for which he does have an outside caregiver.  However, even these hours do not cover all of his personal care needs.  My husband and I, his parents, do the rest.  His needs require one of us (or a trained caregiver) to be within sight at all times.  He cannot attend a before or after school daycare because they will not support him.  As a result, we need to have work schedules where at least one of us is home in the morning and the other after school and bedtime.  Sometimes it takes both of us to support him. 

House Bill (HB) 1694 aims to address the home care worker shortage in Washington state and, among other things, directs DSHS to begin a cost and feasibility study for parents to become the paid caregivers of their children under age 18 who are medically complex or have intellectual or developmental disabilities.  Whitney Stohr is the mother of a 5 year old named Malachi who is medically complex, uses a trach, and experiences epilepsy and spina bifida.  She recently testified in support of HB 1694 in a public hearing.  She explained to legislators that she has two main roles in her son’s life:  a nurturing and loving parent and a nursing caregiver.  Taking care of a medically complex child is so much more than a parent delivering the occasional first aid to a child.  Malachi requires daily if not hourly medical support which required Whitney to resign from her job and put her career on hold.  Malachi’s father, Whitney’s husband, is able to work but works mainly from home so he can assist.  Malachi’s parents cannot be considered paid caregivers because Malachi is under that age of 18.  Parents of children 18 and older can be compensated as caregivers under the current law.  

Whitney has been very involved in advocating for parents to be paid caregivers.  In her words:  “My passion project in disability/caregiving policy is around caregiver pay. I believe that all family caregivers should be compensated for the care work they do. Care work is a job, and family caregivers deserve the recognition, pay and benefits that come along with employment. I am one of the Leads of an informal coalition of parent/family caregivers, called Washington For All Families Coalition, which supports the development of a legislative or regulatory pathway by which parent-caregivers of children with disabilities under age 18 can become contracted (and thus paid) providers through the state….Other states do pay parent-caregivers to care for their medically complex children. This issue is trending, and the conversation around caregiver pay is not going away.” 

Engrossed second substitute HB 1694 passed the House of Representatives and is currently in the Senate.  If it passes the legislature, the new law would remove some of the barriers for paid caregiver recertification.  There would be more flexibility in paid caregiver testing requirements.  Close family members could be paid caregivers with only doing half of the required training. The cost and feasibility study is a small step in the direction of allowing parents to be paid caregivers for their children of any age who are medically complex or have intellectual and developmental disabilities.  A few other states, such as California, do pay parents as caregivers.  I look forward to seeing this study and will continue to advocate on this issue to my legislators.

Take the opportunity to register your position and comment on this bill.  

Read more about this issue by The Arc of Washington State.

**Courtney Criss is the Leadership and Advocacy Manager at The Arc of Snohomish County.  She is also a wife and mother of four children, two of which have Down syndrome.  She was born and raised in the Seattle area and dreams of an inclusive society for all.  Opinions expressed in this article are her own and are not attributed to The Arc of Snohomish County.

Guardianship & Alternatives

Recently the guardianship laws in Washington state changed.  As of the beginning of 2022, there are now two types of protective arrangements:  guardianship of the person and conservatorship of the estate.  Guardianship controls the life decisions of the individual with disabilities and conservatorship controls the financial decisions.  

Guardianship in effect takes away an individual’s rights so the Court is careful to allow guardianship of what is needed to keep that individual safe.  A guardian could be awarded decision making ability for medical treatment for the individual.  The guardian can sign consent forms for treatment and has access to medical information under HIPAA.  The guardian could have control over the individuals’ right to vote, marry, or choose a place to live.

The parent does not always have to be the guardian.  A parent could petition for guardianship to protect the parent’s adult child but then ask another person or organization to have the guardianship.  An adult sibling or a trusted friend could be the guardian

How are caregivers in Snohomish County of adult individuals finding what works best for them?  Here are stories of three parent caregivers in our community who have adult children with intellectual/developmental disabilities.  Names have been changed to protect their privacy.

Mary

Mary is the mother of an adult with autism who lives in supported housing.  She believed from a young age that her daughter would need full guardianship and she wanted to be her guardian.  She started the process a few months before her daughter’s 18th birthday.  She was able to file the papers without an attorney (pro se) with a friend’s help.  “My daughter’s guardian at litum [now called ‘court visitor’] was wonderful;  she came to our home.  There was no need to be concerned.  And she helped us understand the next steps.  She was also there in courtroom.”   

Mary now uses a lawyer to keep track of Court dates and reports.  She is required to report to the Court every three years.  The last report was 2021 before the reporting rules changed.  She has been educating herself about the new requirements and has the reporting forms ready to go.  She feels prepared for next reporting year.  She is confident in her record keeping skills:  keeps every receipt and staples them to her monthly statements  For example, when Mary buys clothing for her daughter, she keeps the receipt and files right away.  Her advice is to not let the paperwork build up.  Mary is also her daughter’s representative payee for SSI.  Her daughter has an Arc endowment trust which sends quarterly updates and a few disbursements come out of that.  The Court wants to see a plan of care and financial plan but the questions are still basic.   

Sarah

Sarah is the mother of a young man with autism who lives with her.  He works a few days a week getting there by riding his bike or the dart bus.  In his spare time, he makes detailed travel plans for him and his family.

A few years ago, Sarah applied for guardianship of person and estate soon after her son turned 18.  She used a local lawyer that she met through The Arc who walked the family through all the steps and answered all their questions.  The attorney made sure the process was on schedule, timely acquired all necessary documents, and walked the family through the steps answering questions along the way.  A guardian ad litum (now called a court visitor) was assigned and after meeting with Sarah’s son, made a recommendation to the court.  

At the hearing, the judge spoke directly to family and reiterated the fiduciary responsibilities of taking care of their loved one.  The guardian needs to know that the child is not a child anymore but an adult.  Sarah now makes decisions for son regarding employment, finances, relationships, housing, medical records, and consents for medical treatment.  Her son’s input is strongly taken into her consideration and he retains his right to vote.  Review of the guardianship at first was set up annually.  Once the Court was satisfied at how the guardianship is managed, a review was set for every three years.  Sarah hopes that one day in the future, one of her other children will become his guardian so she keeps the whole family involved.

Kylie

Kylie’s son experiences autism.  Her son has the ability to make choices, communicate his needs and wants and to effectively advocate for himself.  He has a history of making good decisions, with support.  When he turned 18, she chose not to petition for guardianship.  Guardianship would terminate his rights.  Their goal is for him to live his best life, as independently as possible. Instead of guardianship, her son granted his parents power of attorney.  This allows him to still be in charge of his life and still receive support.  Guardianship can be petitioned later if needed.

As her son was growing up, Kylie thought that she would need to petition for guardianship when her son became an adult.  After attending Arc educational seminars about guardianship, she learned there were other options available.  With an attorney's help, they set up two separate powers of attorney, one for financial decisions and the other for healthcare decisions.  She and her husband also met to work on estate planning and set up a special needs trust.

Protecting your loved one with a disability can be accomplished in a variety of ways.  The Arc of Snohomish County is hosting a seminar about guardianship and other protective arrangements on Wednesday, Oct 19 at 11am.  Register for this event. 

How My First Capitol Rally Encouraged Me to Be Active in Legislative Advocacy

By Courtney Criss, Leadership and Advocacy Manager

At the time I was born, it was not uncommon (and might have been very common) for doctors to recommend that parents place their baby or young child with an intellectual or developmental disability (IDD) in an institution.  I don’t doubt they loved their children and probably visited as often as they could.  There were few alternatives at the time to institutionalization, with little to no resources and assistance to raise children with IDD in the family home.  Children of this generation did not receive in-home therapies like mine do.  They did not have the right to a public education before the Individuals with Disabilities Education Act (IDEA) of 1975, which allowed all children to attend school and introduced the Individualized Education Program (IEP).  There was no respite care or personal care in the home.  The Division of Rehabilitation Vocational services (DVR), which provides training, job coaches, and job placements, was more aimed towards physical disabilities. The Americans with Disabilities Act (ADA) was not even passed until 1990.

I am not familiar with how institutions or Rehabilitation Housing Centers (RHCs) treat and care for individuals with IDD.  I have not researched it on my own.  I have heard what self-advocates have said about their experiences living in institutions.  A self-advocate named Mike reported to King 5 that they treated him like a dog.  Another self-advocate named Ivonova Smith told the crowd at the Rally on January 25th that she could not have married and had children if she was still in an institution.  

I believe the concept of institutionalization came from the ableist and eugenicist attitudes of the 19th and 20th centuries. It came from harmful ideas about what people with IDD can and cannot do, how and where people with IDD should live, and how people with IDD should interact with the larger community.  Since their inception, institutions have had a documented history of violence, abuse, and neglect. When the community is not involved and privacy reigns, abuse can flourish.  Just like today, when children are 100% kept in special education classrooms away from general education kids and teachers, abuse including restraint and isolation can occur.  It is much less likely to occur when a student with IDD is educated alongside his general education peers and included in the general education environment.  If an individual with IDD is not living in an institutional setting but in the community, abuse may still occur but it is logical to think it would be less with more exposure to and more participation in the community.  With proper education and communication devices if needed, individuals can express themselves and report abuse much easier than they could if living in an institution.

Today, there are 500 individuals with IDD living in state institutions in Washington.  This is a relatively low number compared to the number of individuals with IDD living in Washington.    

I had never been to a rally before I went to the Supported Living rally on Wednesday, January 25th in Olympia. So when self-advocates and the advisor for People First were organizing a day trip to Olympia, I made sure I could join.  I’ve heard it has been difficult to engage folks in advocacy and general activities as we are coming out of the pandemic.  Only 5 of us drove to Olympia.  It was kind of a last minute idea to go so we did not have appointments with any legislators.  I was surprised at how open the capitol building is;  I had expected x-ray machines and bag searches.  The rally was held outside on the capitol steps.  Ivanova Smith was the M.C. She introduced a variety of speakers from state representatives and senators to self-advocates to caregivers and interspersed with leading chants of “What do we want?- Community living!  When do we want it?- Now!”  

As a mother of young children with Down syndrome (they are 3 and 9), I am still learning about the IDD community and past history.  At least three speakers with IDD who have lived in institutions shared their experiences of before and after.  They spoke of the freedom they have now to go shopping, attend church and sporting events, hang out with friends, date significant others, and eat what they want.  These are activities and choices that people without disabilities take for granted.  People with disabilities can live and thrive in the community with proper supports including communication devices, wheelchairs, caregivers, nurses, and home and community based services.

Unfortunately, there are no immediate plans to close Rainier, Fircrest, or the other two DSHS institutions in Washington State.  Before institutions can close, the 500 individuals currently residing in them will first need to be transitioned to supported living in the community.  There are a few proposed bills this session to bolster supported living for people with IDD. Two of these proposed bills in this legislative session can further the goal of closing institutions and providing housing in the community. HB1265/SB5302 proposes a property tax exemption for nonprofit adult family homes that serve people with IDD.  HB1654/SB5506  proposes the creation of “enhanced behavior support homes” for individuals with IDD who have higher support needs.  These homes are designed to be in the community and have no more than 4 individuals in each home with 24 hour supervision.  At present, there is no timeline to close the institutions and it is not clear if they will ever be closed.

If you want to comment on these or any bill, you can click a button on the right of “Bill Status-at-a-Glance” called “Comment on this bill.”  The Comment button will lead you to a page where you enter your name, address, and whether you support or oppose (or are neutral) about this bill.  You can also enter in comments up to 5000 words!      

The Arc of Washington State hosts a Zoom session every Wednesday at 10am about this year’s proposed bills.  Advocacy Days are organized by topic.  Feb. 15 and 22nd are about housing.  April 5th will also focus specifically on RHCs.  These sessions are recorded so you can watch past sessions.  You can register here:  Advocacy Days - Washington State (arcwa.org).  

I have to admit that legislative advocacy was overwhelming to me before I started working at The Arc.  The Arc of Washington’s website organizes the information well.  The Arc of Snohomish County can also explain bills to you.  If you have any questions about proposed bills and how you can voice your concerns or opinions, please contact us:  Jake@arcsno.org, Rachel@arcsno.org or myself, Courtney@arcsno.org.  

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Courtney Criss is the Leadership and Advocacy Manager at The Arc of Snohomish County.  She is also a wife and mother of four children, two of which have Down syndrome.  She was born and raised in the Seattle area and dreams of an inclusive society for all.  Opinions expressed in this article are her own and are not attributed to The Arc of Snohomish County.

Mi corazón te ama desde antes de conocernos

     Cuando mi hijo recibió una intervención temprana la palabra Autismo surgió de repente. Autismo era algo nuevo y desconocido y una parte interna de mi tenía miedo. Pero así como mi mente examinaba posibilidades el miedo solo crecía. Mi preocupación era si yo sabría guiarte en este camino y darte las mejores oportunidades. 

Platicando con una terapeuta de mi hijo discutimos lo que yo experimentaba; ella me preguntó las razones por las que yo adoro a mi pequeño y pregunto si un diagnóstico lo podría cambiar.

 La respuesta mía fue definitiva y natural: nada cambia lo que tu eres para mi, pensé en silencio y le dije solo -No.

 Y ese -No, ha sido una de las muestras más profundas de mi amor por ti, negar que mis sentimientos cambiaran fue admitir que te amo y nada jamas lo puede cambiar. 

Con el paso del tiempo he descubierto tus virtudes y cuanto te necesitaba. Agradezco a la vida por tener la oportunidad que me llames mamá.  

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My heart has loved you even before we met. 

     When my son received early intervention the word Autism came up all of the sudden. Autism was something new and unknown and an inner part of me was afraid of all the unknowns. But even as my mind explored possibilities, the fear only grew. My concern was whether I would know how to guide you on this path and give you the best opportunities.

Talking with my son's therapist, we discussed what I was experiencing; she asked me the reasons why I adore my little boy and asked if a diagnosis could impact my feelings. 

My answer was definitive and natural: nothing changes who you are to me, 

I thought in silence and I just said -No.

 And that -No, has been one of the deepest signs of my love for you. Denying that my feelings could change was admitting that I love you and nothing can ever change that. Over time I have discovered your virtues and how much I needed you. I thank life for having the opportunity to have you call me mom.  

~Anonymously submitted by an Arc of Snohomish Mom