Winter_2005

Margaret’s Story

All people have milestones in their lives from infancy through adulthood.  A major milestone is when we leave our parent’s home.  Some young adults actively pursue moving away and others would rather stay put.   Many people with disabilities do not leave home until their situation is an emergency, when their parents are no longer able to care for them, or when their parents become deceased.

Margaret, a 26 year old woman with significant disabilities, including being unable to speak, is facing leaving home earlier rather than later.  Her parents, Charlene and Steve Hood decided they want Margaret in her own living situation while they are able to have input and help her with the transition.  They do not want    Margaret to face a sudden uprooting from the only care providers she has ever known in case they should become unable to care for her themselves.  Charlene and Steve know of such situations and the trauma involved which can cause regression of skills and development of behavioral issues. The loss of a loved one is distressing enough, but should she need an emergency placement through Division of Developmental Disabilities (DDD) she may be placed far from her own community where she has many extended support systems (family and friends).

The Hoods want to avoid such a situation by establishing Margaret in a living situation close to home.  They want to be sure she is in a safe environment, feels secure with whom and where she lives, and is happy and content with her life.  In their opinion, this is the responsible parental decision to make. At the age of 18 Margaret qualified for the DDD waiting list for residential placement, but active pursuit of placement has only come about in the past couple years.   

Emergency placement aside, Charlene shared how she has seen so many people with disabilities blossom after leaving their parents’ homes.  Charlene and Steve readily admit they do far too much for Margaret which hinders the development of  her independent skills and progress. 

Last year Margaret received residential placement status from DDD.  Next came the challenge of appropriate placement.  Her parents want Margaret to stay in Grays Harbor where she knows the area, is well known and has a large extended family that is very supportive. Group homes and adult family homes were immediately crossed off the Hood’s list as inappropriate for Margaret.  They chose supported living.

They have reviewed three such homes with mixed results. The parents liked the first one but, because of the emergent need of another person, Margaret was denied placement.  Also the staff felt there was too little structure for Margaret as the residents tend to decide on the spur of a moment to pick up and go.  They did not     understand this because Margaret loves to go, go, go. 

The next home was just the opposite.  Half the residents were quite home bound.  Margaret’s  parents want her to have a very active social like  she currently   enjoys so this house was rejected.

The Hoods and the staff of the third home agreed that this would be a good fit for Margaret.  Short visits and a couple lunch dates were set up over a two week period.  Everyone seemed to get along and Margaret was quite happy to be in the home so placement transition began.

Margaret’s new home is what DDD calls Supported Living and is overseen by Twin Harbor’s Group Home Association.  Three other women (also with disabilities) live in the home.  The house is staffed 24 hours a day with people to assist the women with their needs and who also make it a priority for the residents to have access to their community on a regular basis.  This is a priority to Steve and Charlene because Margaret has been very active in her community all her life.  They worried about her being stuck in front of a TV but that has certainly not been the case with these residents as they are always jetting off somewhere.  Margaret pays for her share of the rent,    utilities, food for the home as well as her own personal needs from her Social Security Income (SSI) check.  Charlene is her payee and assists Margaret with disbursement of her monies.

Since the beginning of last    November, Margaret has increased the number of days per week and hours per day until she is now   going to her new home daily from early morning until after dinner on week days.  Her new bedroom   furniture and many of her favorite things have been moved there.  She now has her meals, evening bath and meds at her “other” house.  The overall transition has been very slow and difficult for Margaret and her parents. Daytime stays have not been a problem as Margaret is used to being away from home while her parents are at work.  She looks   forward to being with the other residents which is very encouraging to her parents. However, when it became time for Margaret to start sleeping overnight the issue became very emotional and trying.  In efforts to assist with this transition Margaret’s mom spent the first night with her.  What an eye-opener for Charlene.  She was unaware that the staff        performs heavier housekeeping (cleaning bathroom, vacuuming, etc.) during the night shift. She also did not know they have hourly bed checks.  Charlene laughed and said she could not figure out why    someone was walking up and down the hall all night.  None of this seemed to disturb Margaret or the other residents but Charlene got little sleep at all.

Most weeks, Margaret stays a few nights a week in her new home.  Charlene and Steve know that    frequently she is very tearful between dinner and bedtime when she expects to be picked up.    Hopefully, with the holiday season over she will be able to progress to more frequent stays and recognize her new residence as home and her parent’s home as a place to visit.  It is great that Margaret will be living near her parents and since it is her “home” and not an institution she is allowed to come and go freely, just like other people her age living in their own homes.

Some great things have      happened during this time.  In the short time Margaret has been in her supported living environment she has gained new skills and shown greater independence.  One     morning Margaret wanted to wear a sweatshirt that her Mom had just washed and not dried.  There was no time to get it dry before leaving the house so Margaret put it in a bag, and upon arrival at her new home put it in the dryer and turned it on herself.  Charlene was very pleased as she had never done that at home.  Also, when visiting at her parent’s home she now keeps her bedroom door closed, picks up after herself and wants to help with meal prep.  According to her mom, these are definitely not skills learned at home.  Bath time was something else her parents worried about   because she would get out of the tub and dress in the hallway. With staff support she has learned to get out of the tub, put on a fluffy robe then go to her room to dress.  Now she picks out her clothes and dresses appropriately .

Steve and Charlene have had to answer questions like “how can you do this to Margaret?’  They keep in mind they are not doing this to Margaret but for her; for  Margaret to be established in a new home with increased independence while they are at her side to help her through the adjustment phase.  This is definitely FOR Margaret.  They remind themselves              frequently, especially on those   tearful evenings, that moving away from home is hard on most young adults.   Then they are reinforced when Margaret shows off her new skills.

All these wonderful milestones happening in Margaret’s life are very exciting for Steve and       Charlene.  They began this         transition early in Margaret’s life which is allowing them to take the small steps necessary to provide her with the emotional support she needs.  They are able to see        Margaret mature and grow in     independence.  They are able to have peace of mind knowing    Margaret is being established in a place she can call home with people who care about her and her quality of life.