Medical Home Meeting: June 12, 2013

Our last meeting before the summer break began with Baystate Health’s Child Behavior Health therapists. This out-patient service is located at 3300 Main Street. The group can be contacted for general inquiries at (413)794-1038. Full interpreter services are available.

Sarah Detenber, Vicki Weld, and Sara Wiener spoke at the meeting. The staff includes psychiatrists, psychologists, clinical prescribers, and licensed independent clinical social workers. A strong part of their mission is to provide care for children and families with special health care needs. This care includes the child, parent, couple, family, and siblings. They accept referrals from specialists and primary care providers.

The group works with neurologyrheumatology, and the pediatric pain clinic. In addition, the group works with a hyperacusis group when indicated. They offer an eight-week cognitive-behavioral therapy program with rheumatology and occupational therapy, a multidisciplinary eating disorder clinic, and a medical coping clinic that sees children with new diagnoses. They have also referred families to Brain Balance Achievement Centers, The May Institute, and Autism Intervention Specialists.

Diagnoses they have worked with:

Obsessive-compulsive disorder

Anxiety disorders

Patient types they have worked with:

Young children

Non-verbal and augmented communication capable

Autistic children

Children with cerebral palsy

Overweight children in the Mighty Program

 

The second presenter was Tina Champagne from the CHD Institute for Dynamic Living located at 342 Bernie Ave, Springfield. The program covers behavioral health and occupational health for ages three and up, but their focus is three to five years of age. Common diagnoses include learning disabilities, trauma, autism, and a need for applied behavioral analysis services. Many of the children in the program have needs that complicate their occupational therapy treatment plans. This program deals with these issues to provide customized treatment for the children. The program is expanding and now they offer a large sensory gym and have an onsite psychiatrist that is available for consultations. They do not have an accreditation from the Commission on Accreditation of Rehabilitation Facilities, but are working on it to help expand insurance coverage. They currently accept most insurance.

To schedule an appointment ask for Tina’s program at (413)737-1426.

Medical Home Meeting: May 8, 2013

Our May meeting primarily consisted of a presentation on transition services by representatives from Community Enterprises. The mission of Community Enterprises, Inc. is “to support self-determination for individuals with disabilities and/or other challenges to actively live, learn, and work in the community.” They work with 18 to 22 year olds in Franklin, Hampshire, and Hampden counties as well as in Connecticut in New York. Community Enterprises has contracts with the Massachusetts Department of Developmental Services, Massachusetts Rehabilitation Commission, Massachusetts Commission for the Blind, Massachusetts Department of Mental Health, and the Massachusetts Rehabilitation Commission/Statewide Head Injury Program to provide these services.

Community Enterprises offers transition resources to clients and families. One of which involves working with 15 area schools to help in IEP development. Schools generally focus on one-on-one support, but it is important during transition time to learn that is not available in the workplace. The goal is to train and support clients to help them earn a living wage. Community Enterprises aligns their clients to job skills by their strengths and interests. The clients have the opportunity to discover what they like to do by trying different jobs. This allows them to get used to having a work schedule. Community Enterprises teaches clients to advocate for themselves in the work place and receive support during the job training period and periodically afterwards. Another model Community Enterprises uses to help clients get into the workforce is through group employment with support of a job coach, for example packaging produce at $8 per hour.

Community Enterprises also provides guidance with independent living skills, such as cooking, laundry, money management, and travel. The help clients connect with college resources and offer social coaching. For example, the ASSET program at Holyoke Community College (Achieve Success through Supported Education and Training) is an intensive job training program in Business or Culinary Arts. Mary Curtin is the contact for this program at Community Enterprises.

Another program offered through Community Enterprises is Adult Family Care or Home Share program. The program staff can be contacted at (413) 733-1240, ext. 128 and are located in Pittsfield, Springfield, and Holyoke. The program provides support and services for individuals over 16 years old who are receiving MassHealth or Commonwealth Care and have a permanent disability. Individuals who qualify must require extra assistance with care, meaning a nurse and care manager visit regularly. You do not qualify is you receive PCA services in your home. There are two levels of care. Level one is prompting and supervising self-care while level two is hands-on assistance. MassHealth provides reimbursement depending what level of care is assigned; Level one is $24/day and level two is $49/day. Spouses and legal guardians are not eligible for this reimbursement, but other family members can provide support and be reimbursed. This program’s goal is to keep people with disabilities out of nursing homes and skilled nursing facilities because living with a family member is often more comfortable than other options.

Community Enterprises Contacts:

Mary Curtin, Director Holyoke: 413-536-4200

Stephanie Tonelli, Community Developer Springfield: 413-733-1240

John Tierney, Community Developer: 413-499-1248, Ext. 16

Greenfield: 413-794-2351

Northampton: 413-584-1460

Medical Home Meeting: April 10, 2013

Our April meeting began with an update from Marianne Beach on the directory of people who participate in the Medical Home Work Group meetings. Copies were distributed that include our mission and vision. The directory also provides a description about the services our regular participants offer. The directory is not meant to duplicate the “Hampden County for Families Program Resource Manual” or the “Family TIES 
of Massachusetts Directory of Resources 
for Families of Children and Youth with 
Special Needs”. We are hoping to link the materials in the directory to our blog and Facebook page. Future discussion will be conducted in September regarding a funding option of requiring a nominal fee for being included in the book.

Susan Tapases lead a discussion for the Shriners Community Health Needs Assessment Survey to which the group provided feedback. Essentially this portion of the meeting was a focus group for how Shriners can serve Hampden County families with children zero to eighteen years old with physical or developmental conditions lasting twelve months or longer. In particular, they are looking at issues surrounding quality of life, transition and family needs for special needs kids in Western Massachusetts with a specific focus on how Shriners can improve health care access and quality of care.

The group provided Ms. Tapases with feedback on a full range of topics including: specialty care, insurance, transportation, respite care, transition aged kids, and equipment and home environment. In regards to specialty care, families often meet roadblocks from the start in finding specialists and getting appointments, especially in a time conscious frame because of a lack of knowledge and long waiting lists. In addition, obtaining appointments, diagnosis and evaluations often take too long and sometimes children age out of early intervention programs before evaluations are completed. Not only that, but some parents are not well equipped to advocate for their families and aren’t aware of their rights or the options available to them. Parents typically cannot hire an advocate for their family due to resource constraints. Lastly, office hours are a challenge for working parents.

Next, the group touched upon insurance challenges. Coverage and access can vary broadly. In particular, families experience delays in neuro-psych evaluations due to insurance limitations. A portion of our families is also undocumented.

Transportation is also challenging. In Western Massachusetts there is limited access for transportation assistance, particularly for travel to non-medical places. In addition there are restrictions on who can accompany patients to medical visits while using medical transportation. Another challenge, specific to Western Massachusetts is seen in the logistics of seeing a specialist in the area, but needing to travel to Boston for testing. On a larger scale, respite care for Western Massachusetts patients requires traveling over 100 miles out of the area.

Transition-aged kids, often with learning issues or complex medical needs or mental health or substance abuse issues, who drop out of high school have little support or options.

Lastly, there is a lack of loans available for medical equipment and access to recycled medical equipment is not available. In addition there is a lack of financial assistance for home renovations to accommodate special needs.

The group discussed ideas for Shriners to better support families. Shriners can support home visits, after school care, parent support groups, and day respite. They can help parents with physical therapy and occupational therapy that can be done at home and can assist in choosing equipment.