As a doctor for children, I often talk about sleep during wellness and sick visits.
Sleep is an important life skill. It teaches children how to calm themselves and rest. Parents have an important role in helping children to healthy sleep habits. Improved amount and quality of sleep affect children’s behavior and abilities to think.
Below I will discuss some tips that parents can practice for healthy sleep habits.
- Decide with your family when is a good time to start sleep training.
- Decide how many hours of sleep your children need. Infants sleep for 12-14 hours. Hours decrease gradually as children get older. On average, children need 10 hours of sleep. If they nap during the day, do not forget to account for nap time to the total daily sleep time. For example; 2 hours nap in the afternoon will leave your children with only 8-10 hours of sleep at night. That can be a reason why children go to bed late at night or wake up very early and refreshed.
- Talk to your children about (tonight’s plan). For example “we will take a bath, read a story, and then it is bedtime”. Change the language based on your children’s understanding. Young children would benefit from (first…then strategy). For example “first we take a bath then we read a story”. Use picture books to share stories about sleep.
- Use a reward system. Rewards can be increased or spaced out. Rewards can be an activity the children will enjoy, for example spending play time with parents, or reading a favorite book together.
- Do not get discouraged quickly if some attempts are not successful. Experimenting is a key. Some plans do not work the first time or at all. Try different things. For example, some children may prefer bedtime stories and some may prefer bedtime song. Other different options parents can try; white noises, a night light, a security object/blanket or all of them.
- Avoid high affect games or TV before bedtime. Bath and stories can help to relax your children.
- Remind your children that bedtime is soon. For example “5 more minutes to bedtime”. Some children do not tolerate transitions quickly. You can use a fun or colorful alarm clock as a reminder.
- Increase their Melatonin Dark room, with no TV or electronic devices.
- Create sleep associations. Children like their routines. It is ideal if they go to sleep in similar conditions every night (same bed, room, lights off etc.).
- For younger children, put them to bed semi-awake. Allow time for them to calm themselves. This way they learn to go back sleep if they woke up the middle of the night.
- If your children cry in the middle of the night, attend to their needs. Comfort them, but avoid picking them up or bringing them to your bed.
As a future public health worker, I want to learn more about programs that help disabled people. One of them is Adult Foster Care.
Who is eligible?
- A person with a disability
- Must be 16 years of age or older.
- Can not live alone
- Must need daily assistance with one or more activities of daily living for example: bathing, dressing or eating.
- Must be approved by a doctor.
Do you have to pay?
The caregiver will receive tax-free money.
For more information visit Massachusetts Council for Adult Foster Care.
Mallory and boyfriend Owen enjoying the New England coast after their move to Boston
When I got accepted to the Boston University School of Public Health in the spring of 2012, I was excited and thrilled, but underneath those emotions was a layer of dread and anxiety. My acceptance meant that inevitably I would have to move from my home in rural Maine, to the big city. This of course was my intent when I applied to the graduate program at BUSPH, but the fact that the transition would now be a reality was nothing short of daunting.
I began telling people about the upcoming move for both my boyfriend and I, who use mobility devices to get around independently and would require fully accessible housing, and received varying reactions. Many people shared the same initial thought of, “What are you, crazy?” and we were told horror stories of the lack of accessibility within the city. I had spent months researching academic programs, and where I wanted to live, and although I had researched cities based on accessibility, but I refused to let my disability and physical challenges dictate the direction that my life would take.
We began the housing search feeling optimistic. Being from small, rural areas, we had what we thought was a reasonable budget and we had lots of connections in the disability community, both in the state of Massachusetts and nationally. What we found however, was that those things only got us so far. The university was supportive, but they had limited options for graduate students, and none that would be sufficient for two people who required accessibility.
In our early phases of searching, we started by looking specifically for just accessible apartments. We spent hours scouring Craig’s List only to find hundreds of old, cramped low budget apartments with flights of stairs for an entrance. There were many within our budget, and we discussed options of how we could “make it work,” through various accommodations or just being creative.
I called and emailed every listing that looked like something that could work for us. Nobody called me back, or responded to my inquiries. With our modest budget and request for a fully accessible unit, we were not a realtor’s dream. One broker had a conversation with me about a unit she was sure would be “perfect” but the conversation ended abruptly with a last interaction of her sending me a text message of just a smiley face emoticon.
Another woman called me back and we were able to arrange for a friend to do a video tour of the potential units she had in mind for us. Even from the short videos we could tell the apartments were not accessible, and the agent had no experience with any sort of disability. We knew it was a red flag when her first question to me in our conversation discussing wheelchair accessibility was, “Is one or two steps OK?”
Finally, I took my blinders off of just wanting so desperately to move to the city and came to a conclusion that this was unacceptable. We should not be forced to accept something that wouldn’t truly work for us when other people without disabilities had thousands of apartments to choose from. We were looking to make a move that would change our lives. We were both new at life in the city; we were going to be away from our immediate families, and taking on a lot of things for the first time. Wherever we decided to live, was where we were going to be for the good, the bad, and the very ugly. At the end of the day we did not want to get into our apartment and have to exert the last bit of our physical and emotional energy to do something simple like use the bathroom. This was going to be our HOME. I understood that going to grad school would mean that I would have to make sacrifices, but I was not willing to sacrifice my inclusion in society for the sake of finding housing.
It was at that point that I decided to reach out to our friends in the disability community. I contacted the regional Center for Independent Living and explained our situation, of how we were hoping to live independently in the city of Boston, and our tight timeline of needing to move in time for me to start classes at the end of the summer. The woman I spoke with was kind, but her response seemed automated as she began explaining the process for applying for subsidized housing. I kindly explained to her that I was not looking for that kind of support, simply buildings that were accessible. She seemed surprised at this request and was silent for a moment. It seemed odd to me, that in asking for LESS support, it could actually be more difficult of a request.
She referred us to a registry that listed all the accessible properties in Massachusetts and that could be searched based on various criteria such as location, budget, or specific accessibility features. However, in using this search engine, we only found buildings that were specifically for senior citizens, individuals that were of low- income, or were located a significant distance from the city, or a combination of all of those things. The more we narrowed our search, the fewer listings that resulted, and we started to realize that what we were looking for simply did not exist.
Just when I was actually considering deferring my educational offer, in a last attempt, I reached out to a particular property that looked promising. It was far beyond our original budget and considered a “luxury housing development,” but it was fully accessible, safe, in the ideal area, and had amenities that would actually make our lives easier instead of harder. Within days, the apartment was ours. It was a 500 square foot studio, so we knew space would be a challenge, but we saw no other options.
We have been living in Boston now for almost two years, and I have become even more passionate about the existing housing challenge. While many people living with disabilities are aware of the struggles to find accessible, equal opportunity housing in the city, I have learned that it is not necessarily common knowledge to those without disabilities. All students struggle to find housing in the city as more and more people move to Boston each year, but when I told my peers that we were given the option to live in a nursing home so I could attend school, they assumed I was joking.
People assume that all buildings have ramps and elevators, and bathrooms that can fit a wheelchair. Until they start looking at things through a different lens, they just believe the city works for everybody. The truth is that the housing options for people with disabilities are limited and segregated.
While the models that are available may work for many people, they should not be the only options. Housing is ultimately the foundation for all people to live healthy fulfilling lives and for people with disabilities, this component can be even more crucial. If people are forced to live in unsafe conditions or away from their peers just because they require accessibility, they will be even less likely to be able to achieve success in employment, education or other endeavors that would help them to become equal members of society.
With the thriving disability community in Boston, and the current political efforts to increase housing in the city, I do believe there is progress being made, but until we have everybody on board, and understand the level of this problem, there is still a long way to go!
Shared living is one of the residential service models available to individuals with intellectual/developmental disabilities (I/DD) who receive services from the Department of Developmental Services. Shared living services provide support to the individual in a natural, family environment.
An important focus of shared living is to foster relationships and promote community inclusion. Sexual expression can be a part of some relationships.
A provider’s role
Shared Living Providers (SLP) can support the person living in their home to develop a positive sexual identity. By providing a supportive, non-judgmental environment, the
SLP has the opportunity to assist the individual with building a healthy self concept, positive self esteem and confidence to discover who they are as an individual.
Another area that a
SLP can influence is the person’s experience of intimacy and building healthy relationships. It is very important for a
SLP to work with the individual to build a home environment that is safe and comfortable. It takes time and acceptance of the individual for who they are to build a trusting relationship and create an intimate environment where the person feels at home.
Some things to remember
• A person with I/DD is a sexual being and has the same need for relationships as everyone else.
• It takes time for a person to adjust to a new living situation and being around new people. Trust has to be built between everyone. Making consistent time for 1:1 attention is a great way to make a person feel accepted.
SLPs have to know their own limits; sexuality is complicated. The topics being raised may challenge your comfort level or may be topics you don’t know well enough to confidently discuss. As a
SLP, if you need help, ask your case manager at the agency.
• Take the person’s questions seriously. They are struggling to understand their feelings and learning how to express them.
Together we can make a difference in how a person with I/DD understands their sexuality. In turn, they can learn how to enjoy their relationships in safe, healthy and fun ways.
This month Kathy Kopitsky, Director of the Adult Family Care (AFC) program at the Minute Man Arc in Concord has shared insightful blogs of how Adult Family Care is a great option to living alone, nursing home or other institutional care settings. Adult Family Care is an exciting and growing statewide program in Massachusetts.
What is Adult Family Care?
The term Adult Family Care (AFC) is also known as Adult Foster Care. AFC is a MassHealth program which supports individuals age 16 and older who are unable to live independently due to a medical, physical, cognitive or mental disability. AFC participants live with trained paid caregivers who provide daily care with activities of daily living (ADLs).
Certain relatives of a MassHealth member may serve as that member’s AFC caregiver. Spouses, parents of a minor member (including adoptive parents), or any “legally responsible” relative of the member may not become an AFC caregiver.
For additional information about Adult Family Care, click on MassResources.org link. Scroll down to the A-Z Program list on the left and click on Adult Family Care / Adult Foster Care (AFC). Here you will find excellent comprehensive information about adult family care eligibility, caregiver information, and how to apply for AFC services.
Locating AFC Provider Agency
Currently there are fifty seven AFC provider agencies in Massachusetts. To locate an AFC provider near you:
- Contact your local Aging Services Access Point (ASAP) to request list of AFC providers in your area. To locate your local ASAP call 1-800-AGE-INFO (243-4636), TDD/TTY 1-800-872-0166, or go on-line to ASAP Locator
- Contact Beth Shelton, MassHealth AFC Program Manager, at (617) 222-7485 or by email at firstname.lastname@example.org
Click here for Adult Family Care / Adult Foster Care programs that are listed on the New England INDEX website.
Family Care-giver Handbook – Home Care
provides great information about home care services, assessments of physical, health and nutrition needs; and how to find and pay for services.
The dictionary definition of “caregiver” is “an unpaid relative or friend of a disabled individual who helps that individual with his or her activities of daily living.” Statistics show that as many as one in five adults in the US are caregivers.
Many people provide care giving services with nothing more that the motivation of their heart, yet sometimes it is because there is no other way for a loved one to get care. And even though so many of us are doing the work, being a caregiver remains a very stressful and lonely thing to do. Where do you go for help? Who will pay your bills if you need to stop working to be a caregiver? Where do you call if you get sick? Who can you call with your concerns? What will happen to your family member if something happens to you?
Support for caregivers is available
As a member of the National Family Caregivers Association, our Adult Family Care program is particularly equipped to help caregivers through the stressful aspects of their work. So much more than training and networking, being a part of an AFC program gives caregivers an outlet for their concerns and essential support. Of course there is the required training, and plenty of opportunities for networking and learning more. However, nothing tops the opportunity for face to face contact over a cup of coffee. That is what George’s parents’ discovered.
“Caring for George when he returned from his day program was becoming harder and harder as his needs were changing” George’s mother Aurora told us. “We knew he needed more support than we could give him. But ‘how’ and ‘who to turn to’ were questions we did not know how to ask”.
Aurora shares their family’s story
“We attended an AFC workshop and right away started working with Kathy Kopitsky to see if we would qualify for services. The enrollment process seemed to take many months. Now, with greater financial assistance, George will begin to receive added support and services. And for us, we will have the help we need to keep George at home. We know that a day will come when we can no longer care for George, but for now, his home is with us, and this fills us with great happiness.”
Next week’s blog will provide a list of resources for Adult Family Care Programs. Check it out. After all, everyone needs nurturing and support, especially if they are providing care for others.
We approached the home in the afternoon, just before everyone returned from school. The mother was late to meet us. She was busy. There was toys and adaptive equipment throughout the first floor of her home. She sat down with a sigh; she looked exhausted. I looked at her and smiled. I introduced myself as the Director of the Adult Family Care (AFC) program and asked how we could help her.
She looked around her kitchen, and then wearily turned to us and responded, “Anything you could do to lend a hand around here would be appreciated.” I then explained to her what the AFC program was.
Defining Adult Family Care
The Adult Family Care program provides financial and clinical assistance to qualifying family members and their caregivers.
The AFC team from Minuteman Arc includes from left, Lori Davis, RN; Mieke Monen, Director of Residential Services; Kathy Kopitsky, AFC Director; and Ashley Poor, Care Manager
We work to assist in caring for loved ones at home. We support all people who, because of medical, physical, cognitive or psychiatric problem, cannot safely live alone.
To be eligible a member must be on MassHealth and need help with Activities of Daily Living (ADLs) on a daily basis. That is, they must need help with mobility in or outside of the home, bathing, dressing, toileting, eating or transferring. A registered nurse and care manager conduct the assessment to determine eligibility. The assessment is an extended and detailed conversation about the sort of help your loved one needs.
The AFC program provides assistance through monthly visits by the nurse or care manager or both, networking opportunities, training and financial support. The financial support would be useful to help with acquiring respite services and other pay-as-you-go services. We can also help caregivers locate community resources.
The role of the family
As the qualified caregiver you have responsibilities too. To qualify as a caregiver, there is an application process and a home inspection that needs to be done. We will also complete a criminal history (CORI) check. These items will be taken care of before we do the assessment for eligibility discussed earlier.
The van pulled up and Ron emerged. He ran into the house, looked at us briefly and then ran upstairs. Mom smiled sheepishly. I raised my hand and said, “No need to apologize. We understand. Now, shall we get started on the paperwork?”
I first took on the Adult Foster Care (AFC) program as a part time project. It has grown so rapidly that I quickly began to work on it full time. After 25 years of working in group homes and day programs, the change in job responsibilities was welcome. And although I will admit that pouring over regulations and standards is not the most exciting way to spend your day, this work has been wonderful.
Much of my career in human services has been with adults, some of whom spent many years in our state institutions. Their families long gone or maybe they just gave up hope that anything better would or could happen for their loved one. I became their surrogate family.
Families face unimaginable challenges
I confess I never gave much thought to the families of the people I helped move out of the institutions; didn’t see much point to it since we never met. I never considered the difficulty of birthing and raising a child with a disability. I never considered the heart-wrenching decisions that need to be made that leads to institutionalization. Never thought about the sacrifices and the adjustments a family makes. Never thought about a time when institutionalization was the only humane option in this country.
I quite honestly, did not give much thought to how families manage life when a member has a disability or a debilitating disease. I simply had no idea of the lengths to which families go to take care of each other and a member with special needs. That may be a reflection of my own family experience; it is clearly a reflection of my ignorance.
Then I had the honor of meeting some of the families in our AFC program. WOW! I had no idea. What a privilege it is to know these families. They move mountains and create miracles every day. I stand in awe.
Adult Foster Care prevents institutionalization
I did not know about the AFC program until I stared working on it. Now I want everyone to know that there is help, both clinical and financial. Gone are the days when institutionalization was the only option. With the AFC program, we can help and support families who choose to take care of a loved one at home. Our aim is to help delay or totally prevent the need for institutional care. There are ways; and we can assist. Let us know how Adult Foster Care may help you or someone you love.